The Beginning....

If you saw me walking down the street, you wouldn't notice that I'm different than you. In fact you would probably pass me without saying a word...You wouldn't know the scars that I have, you wouldn't know my heart is missing, you wouldn't know that only 11 days ago I buried my son.

I am starting this blog now, in the midst of my grief to hopefully assist me in my journey to...the other side? my 'new normal'? happiness?....or whereever I'll end up. So now that I'm in the middle I have to go back to the beginning and explain how I got here...so bear with me.

This journey started, I would have to say, when I met my husband, Andrew. We met the summer of 2004 in Edinburgh Scotland and then fell in love in Dublin Ireland. (I know, a little random). We were both studying international law. I was a student in my first year and he was my T.A. about to graduate. :) From then on we were inseparable. We did everything together, traveled to other countries together, ate and drank and talked about everything. We were immediate best friends; it was like I had known him for years. As it turned out he was from St. Louis and had gone to the same law school, but we had never actually met until then. When the summer ended, I think both of us thought our summer romance was going to end as well, but when he came and visited me right before school started we decided that we were going to try and make this work....Fast forward through 2 years of long distance, a few bar exams, desperately trying to find jobs, unemployment, then underemployment, me converting to Catholicism and finally arriving 5 years later at our wedding. We were married in Dallas, Texas on May 23, 2009. We were so blissfully happy...It's hard to believe that was only 15 months ago.

In December of 2009 Andrew and I started to talk about starting our family. We had discussed it a little in the past, but as we were driving home from his parent's house in St. Louis after Christmas of last year we decided that we were ready and we would just not use protection and "see what happened"....What happens is that you get pregnant! :) We got pregnant on our first "try". We found out January of this year that we were expecting; our baby was due September 20th. I think we were both in shock at first. We didn't think it would be so immediate, so after the shock wore off, probably around the time I stopped being horribly nauseous all the time, we were unbelievably excited. We were going to be parents. We didn't care whether we would have a boy or a girl. This was our first and all we wanted was a healthy baby. Immediately I started thinking about all the things that we would do. Andrew and I would talk about different names we liked, and went though the "next years"...."This next year at Christmas we'll have a 3 month old!....Next year on your birthday we'll have a 9 month old!". At 12 weeks we went to a perinatologist for an NT test which measures the fat on the back of the baby's neck and can determine (or give a good indication) as to whether there are any birth defects....and they can give a good indication as to the sex of the baby. I wish I could say that the reason we wanted the NT test was to prepare ourselves for any birth defects, but really it was so that I could get a jump start on planning the nursery...pink or blue! The NT test came back 95% normal and more importantly we found out we would be having a boy!...our Aidan Jackson. I came out of that appointment floating on a cloud...I was going to have a son!

We were so excited, so happy. I had never been so happy in my life. We knew that the sex prediction at our test was not 100% accurate, we would find that out at our 24 week ultrasound at our OB, but I knew it was a boy...I remember telling Andrew that I knew it was a boy even at 9 weeks. I don't know how I knew, but I did. I was horribly anxious about the ultrasound coming up...I was so excited, but was really concerned about having to take back all the boy stuff I had bought for the nursery in case our perinatologist (and me) were wrong and I was having a girl. I was also kind of irritated that I had to wait 24 weeks. Most women go in between 18-20, but my OB had a different policy so I just went with it and tried to be patient....which is definitely not one of my virtues. :) ...Really, taking back baby clothes was the only thing I was concerned about...I was so blissfully happy it never even crossed my mind that something could go wrong. I always thought that once you made it out of the first trimester (12 weeks) everything would be fine...birth defects are so rare, we are young, things like that don't happen to us....Right?

The day finally came for our 24 week ultrasound, June 3rd. We were so excited. It was scheduled in the afternoon so I left work early and came home so that Andrew and I could go to the appointment together. I couldn't wait to see my boy, his hands and feet and profile....I even grabbed a scoop of ice cream and put it in a cup to eat on the way over because I wanted him to be active and kicking up a storm on the screen. I didn't have to wait long and we were brought in to the ultrasound room. Andrew sat right next to me and held my hand as the nurse put the ultrasound goo on my belly. This moment was the last moment of innocence. What was to happen next would change my life forever...Below is a letter that Andrew wrote to our friends and family to let them know what was going on...what happened...

"To our loved ones:


As you all know by this time, the last 72 hours hours have been the most devastating hours of Mandy and my lives. Right now everything is a struggle for us, so please know that the reason that I have been unable to talk to each of you personally is not because we don't want to talk to you, it just too painful and hard.


On Thursday, Mandy and I went in for our 24 week ultrasound with our OB/GYN. The ultrasound showed what appeared to be low amniotic fluid although the scans indicated that there might be perfectly normal pockets. As a result, our OB referred us to get a more detailed scan at our peri-natologist.


On Friday, Mandy and I went in to our Perinatologist's office. The first things that we heard were wonderful, everything looked healthy as far as measurements of the brain, skeletal, heart, etc. When the Doctor checked for amniotic fluid, however, there was absolutely none. Furthermore, there were a number of cysts over both of Aidan's kidneys which simply put never formed properly and, thus, could not produce the amniotic fluid necessary for the life sustaining growth all babies need while in the womb. The diagnosis was bilateral multicystic dysplastic kidneys due to bilateral uteral vesical obstruction. The prognosis we were given was every parents worse nightmare, there is virtually no chance that Aidan will survive when he is born. The initial diagnosis is only made more problematic because of all the complications associated with lack of amniotic fluid--we could lose our angel while he is still inside Mandy if his umbilical cord becomes compressed or we could lose him at birth because babies need amniotic fluid in order for their lungs to form.


Later on Friday, Mandy and I went to Presbyterian Plano Hospital for additional monitoring and to discuss any possibilities that might help--whether saline infusion would help (it won't because ultimately Aidan's kidneys can't process it to make amniotic fluid, so he would just drink it and absorb it. Plus the risk to Mandy would be enormous as she would have to be injected everyday and the benefit would be non-existent). So we went home and cried ourselves to sleep.


Saturday, our friends Georgina and her husband Dr. John, down in Houston put us in contact with neo-natal specialists at Texas Children's Hospital. Nurses and doctors alike were calling us from their homes on a weekend, taking information and discussing whether our hopes that neo-natal surgery could repair the problem. Unfortunately, because of the nature of Aidan's problems there is nothing that these incredibly kind people could do for us. I will never forget the compassion that the nurses and doctors showed to Mandy and me, two people that they have never even met.


The neo-natal nephrologist (kidney doctor) talked with us for a long time, and he is still going to take a second look at everything when we send it to him tomorrow, but what he told us was different than what our OB and perinatologist told us. In his experience only about 10% of these babies die while in the womb. In most instances mothers carry these children to full term.


So that is where we are now, Mandy and I are just heartbroken. We know that at some time in the future our sweet Aidan will be born and that he will live for a very short time, whether it is seconds, minutes, hours or more, we just don't know, but Aidan will not survive to bring back to the loving home that we have been building for him. When Aidan comes, we will hold him in our arms until God calls him home. We hope to have him baptized at the hospital if he survives birth and will be talking to Fr. John, the priest who married Mandy and I. Thankfully, the Church allows lay baptism in these types of situations and if Fr. John cannot make it in time, I will baptize him myself in God's name. Mandy and I are planning to have a memorial service or funeral service (I don't know how that works yet). We will bury our son close by so that to the end of our lives we can celebrate the life of our son Aidan who has brought so much joy to our lives these past few months. We ask that you all come to be with us when the time comes, we are only planning on having immediate family or those who have become like family to us like--trust your judgment or run it by me if you aren't sure.


Please pray for us, we are begging for God's grace to ease our unending pain. Until then we are taking everything one second, one minute, one hour, one day at a time.


With all of our love,

Andy and Mandy"
 
 
It breaks my heart to read even now...After that day Andrew and I decided that no matter what we would continue to carry Aidan for as long as my body and his body would let me, that we would not be the ones to take his life (as this was provided as an option), that this was all up to God. We decided that we were going to celebrate his life while we had him. He was still alive kicking around inside me. He could hear us and feel us. We were not going to give up on him.
 
We talked to him, read to him, prayed with him. We laughed and I ate just about whatever I wanted. We found out what he liked and didn't like. We talked to him about what the world was like, what his grandparents were like, how mommy and daddy met, stories about our families from when we were growing up. We took him to a Cardinals baseball game (both Andrew and Aidan are huge fans). We took him to the beach. We had to squeeze a lifetime of memories into however long God gave us...And all this time we prayed for a miracle, we prayed that God would save him.
 
During our time with Aidan I researched everything I could about his diagnosis, trying to find a cure, a procedure, anything. Everything I came across said 'fatal' or 'incompatible with life'. As time went on Andrew and I decided that we had to create a birth plan. We were told by everyone that Aidan would most likely be born alive but we had to decided when, how, what we wanted to be performed on Aidan, how aggressive would medical intervention be, etc. I cannot tell you how difficult it is to chose a date to give birth to your child, knowing that date is not only his birthday, but also the day that he will die. We decided to have our birth plan reviewed by someone. We sent it to a woman named Karen Moise, who was a nurse and coincidentally the wife to the neo-natal expert that had reviewed our case immediately after we received Aidan's diagnosis. Having been in Houston already for the Cardinals game, we met with her in person to discuss our birth plan. She suggested coming down to have one of the doctors in the fetal medicine group give a second opinion and do an ultrasound. We came back for the appointment two weeks later, July 23rd, and after lots of scans of Aidan, me and even Andrew's kidneys the diagnosis was the same. There was nothing we could do to save Aidan...and worse we discovered that Aidan's heart was fibrillating...my son was dying. The doctors told us to call our OB on the way home to make an appointment for that Monday because they didn't think that Aidan would make it through the weekend. I was heartbroken. I wanted so much to see my son alive, but I didn't want him to suffer either. I trusted God that he would take him when it was time. On July 26th we went in to see my OB. I had felt movement that weekend and even that morning, I knew he was still with us, and he was. My little fighter was still hanging on, but his poor heart was still fibrillating. My OB was so surprised that he had made it through the weekend....I couldn't help but be proud.
 
On July 27th I woke up to contractions at 2 a.m. At first I didn't know what they were, but as they increased and became more painful I knew....I was in labor. At this point Aidan was 32 weeks and 1 day. We rushed to the hospital...my Aidan was on his way. I still hoped to see him alive, to hear a cry, even now I still prayed and thought maybe God would save him, but God called him home a couple of hours before I started pushing. I was told that Aidan had passed while I was pushing. My OB looked at me and kindly said..."Amanda, He's already passed." I immediately looked at Andrew and saw the tears in his eyes as he said..."He's gone baby."....and even still my heart hoped. When I finally pushed him out I still hoped to hear baby cries, I still strained to hear my son call out to me..but it was nothing but silence. My sweet precious angel was gone. He was with our Savior. 
 
Aidan was born at 3:40 p.m. weighing 5lbs. 1oz and measuring 17inches. He was the most beautiful thing I had ever seen. July 27th was the best and worst day of my life. Even now I look back on that day and think about his little hands and feet, his chubby chin and arms and my heart jumps. I love him so much....
 
"Dear Family and Friends,


My son Aidan Jackson was born sleeping yesterday Tuesday July 27th at 3:40 pm at 32 weeks and 1 day. He was 5 lbs 1 oz and 17 inches long. He was perfect and beautiful. The doctors said that he might have deformities because of the lack of fluid, they were wrong. He was the most beautiful baby I have ever seen.

I went into labor late Monday night/Tuesday morning and had contractions from 2 am - 7 am then we decided to go to the hospital. Aidan was coming early. Aidan means "little fiery one" and my little firecracker was going to come into this world on his own terms. My brave little angel. I had a vaginal delivery even though he was breached. He passed away during the last hours of labor before I started pushing, his little heart had already been fibrillating for days before and it just couldn't handle the pressure of labor. Although he did hang on for the first few hours because I could feel him kick and move inside me. He was such a little fighter!

He was exactly my Andrew and me. He had Andrew's eyes and eyebrows, his olive skin, his big feet, face shape and long body. He had a full head of dark hair like I did when I was born, he had a little overbite and a callus on this thumb (a thumb sucker in the womb like his mommy), he had is mommy's toes (his second toe was longer than his big toe, but only on one foot), and tiny hands like his mommy and he had his grandpa's nose (my father's nose). He was the most perfect thing I have ever seen in my entire life!

NILMDTS photographers came and took pictures shortly after he was born, then all the family came in to be with him. My parents, grandparents, brother, uncle, my best friend Bobbi...all the most important people in my life were there with me to celebrate my beautiful son. It was the worst and best day of my life. I held him for 7 hours before we said goodbye because he had turned cold and his little hands and appendages started to show signs of death. I just couldn't bare the thought of seeing his little body deteriorate in front of me.

For those 7 hours we hugged him and kissed him and sang to him. We prayed with him and Andrew baptized him. We bathed and diapered him and put baby lotion all over his soft skin. We dressed him and swaddled him. I couldn't take my eyes off of him. I loved feeling the weight of him in my arms. He was made for my arms, he fit so perfectly. I kept talking to him and kissing him and rubbing his little head; he had the softest most beautiful hair and the most adorable full lips. I can't tell you how beautiful he was! The moment he was placed in my arms I fell in love. I never knew that I could love anyone or anything as much as I love him. I can't even describe it in words. Its a pure, unconditional, all consuming self-sacrificing kind of love. Its the love of a mother.

Finally we had to say our final goodbyes, and of all the labor pains, and needles and blood and pushing and pulling and everything that I went through yesterday this was the hardest thing that I had to do. It was the hardest thing to have to hand my precious son over to the nurse and watch her take him out of the room, out of our lives forever. When she left I started screaming and crying. I had to use all my strength not to jump out of my bed and chase her down like a crazed woman. I wanted him back. I wanted him with me. I wanted a lifetime.

I know that my Aidan is with Jesus. I know he is safe and loved and I know I will see him again. I know that he is happy and perfect and he will be looking down on us, watching his mommy and daddy. He will never really be gone, we will always have him in our hearts and in our minds forever. We will still continue to talk to him and pray for him. He will always be my son, my first born child, my Aidan. Yesterday at around 7 pm while we were holding Aidan and after my parents left and the day nurse we had went home there were rainbows reported everywhere. I got texted a picture from Bobbi of a complete beautiful rainbow. A double rainbow was reported above my parents house and our nurse reported that she saw one yesterday when she went home. She said it was the most beautiful rainbow she had ever seen, that you could see every color and it was complete from end to end.

Rainbows are a symbol that God is with us, that he will not forsake us, it's God's promise of God's mercy and of the covenant that he has with us all. I think Aidan sent that rainbow to us! My sweet precious angel.

He left this world on his terms. By coming early my little fighter saved me from having a C-section. Ever since we found out about his diagnosis we prayed for a miracle...and yesterday we got one. We held our miracle for 7 beautiful hours. Aidan WAS the miracle we prayed for and He answered our prayers.

Thank you for praying for us these past few weeks, for your kind words/emails/texts. Andrew and I are so blessed to have such a great network of support. I thank God for all of you.

Love,

Mandy, Wife to Andrew, Mommy to Aidan."


We had a memorial service for Aidan on August 2nd. It was beautiful. It was the hottest day of the year...my little fiery one...Mommy loves you so much.


"Yesterday August 2nd I buried my son Aidan Jackson. We had a church service. We had a closed casket because we thought it would upset people to see a baby lying in a casket. The day before we went to the funeral home to say our last goodbyes. He looked beautiful in his christening gown my mom had ordered for him from Ireland. It fit him so well. It was made of white silk and was trimmed in blue around the bottom and around his bonnet. He was wearing our cross and he had little blue booties on his feet. He looked beautiful and the exact same as he did when the nurse took him from my arms.



We had his service in the same church where my husband and I were married not more than 14 months ago. The same church where we prayed to Mary to intercede on our behalf for a child. The same church where our family started. I didn't think that many people would come, I thought it would be just family. We didn't publish anything in the paper, I just posted about it on facebook and my mom told people when/where it was going to be. My husband and I arrived first before anyone else, even my parents. Our son's casket was already at the front of the church. We had brought a couple of pictures of him that we had blown up and they were next to him at the alter. I cried and kissed the top of the casket where I knew my baby's head lay. Throughout the service I just stared at the picture of him and at the casket. I whispered out loud to talk to him to remind him of the promises I made to him. Then it was time for my husband and I to speak. I know normally the parents do not do this, or that it is very difficult for them to do, but I knew that if I didn't speak I would regret it for the rest of my life. When I got up and walked up to the pulpit. I looked out and couldn't believe how many people were there. People I hadn't seen since High School, people I hadn't seen for years! There were over 100 people there, for my son who never drew a breath on this earth. He had touched so many lives. It made me that much more proud to be Aidan's mother.


I poured my heart out on the pulpit. I spoke about my pregnancy, about all the things we did with Aidan. About who he was, about his personality, about how he changed my life and my husband's life, about how he touched people and brought them closer to God, about how my son changed the world. I am so glad that I spoke. I know my Aidan heard me and he was proud.


After the service we all drove out to the cemetery and the priest followed. We had a singer accompanied by an acoustic guitar. Her voice was of an angel. She sang "I Will Carry You" (male version), "Be Still My Soul" and "What A Friend We Have In Jesus". The priest blessed his casket and his grave and we all prayed over him. I was given a crucifix that laid on top of his casket. We have a wall in our house of crosses that we collect on our travels together, we have one from Ireland, one from St. Lucia (honeymoon), one that I purchased for Andrew for our wedding, one from Mexico, one from California, one from Houston...Aidan's cross now hangs there too.


I watched them lower his casket into the ground. I watched them lock his vault. I wanted to watch them put in the first few shovels of dirt, but my husband couldn't bear to watch so we left then.


We left and went to my parents house where they had a reception with food and pictures of the day of Aidan's birth everywhere. My mother bought a cake with a Rainbow on it. Which was very symbolic of the day I had Aidan. The day I gave birth to Aidan I was sent pictures of Rainbows that were seen all over town. On that day it rained as the Angels cried and then the sun came out and a beautiful rainbow was shown throughout the sky..."And God said, "This is the sign of the covenant that I make between me and you and every living creature that is with you, for all future generations: 13I have set my bow in the cloud, and it shall be a sign of the covenant between me and the earth. 14When I bring clouds over the earth and the bow is seen in the clouds, 15 I will remember my covenant that is between me and you and every living creature of all flesh. And the waters shall never again become a flood to destroy all flesh. 16When the bow is in the clouds, I will see it and remember the everlasting covenant between God and every living creature of all flesh that is on the earth." Gen. 9:11-17. I believe that Aidan asked God to send us those Rainbows to let us know that he is with our Jesus in His kingdom; that he is alive and well that he is safe in our Saviors arms."



My best friend put together a slide show to music for us; it had pictures of us throughout my pregnancy all the way to the day he was born. In the video she included words from the letter that I had written to my friends about the day he was born. It is so special to me. I can't wait to get an actual DVD version that I can have for my own. I have been watching this video over and over. I love it.
Here is the link to view it: http://www.youtube.com/watch?v=Ypk0P962JBM

This Tuesday we received all of Aidan's test results back from his birth. We had his chromosomes tested and an autopsy on his kidneys performed. Everything came back as expected. My son was a completely normal baby boy with a blockage between the bladder and the urethra which caused a back up of urine in his kidneys which then caused kidney failure and then caused hypoplastic lungs. The blockage occurring was just a 'fluke', is not genetic and is not likely to happen again. My OB said it was like getting "struck by lightening".  Actually I think the odds of getting struck by lightening are better than the odds of this happening to Aidan (1/10,000 chance)....(I feel like I have won some kind of backwards screwed up lottery...of all the numbers in the jar...how did mine get picked?)  So there it is...My son was normal, healthy, perfect...then he was 'struck by lightening' and now he is gone.

Now it's August 13th...17 days since Aidan was born...11 days since he was buried. It seems like yesterday, but seems like an eternity ago too. For the first few days after Aidan was gone I was hysterical, then it was like..."Did that really happen? Was I really pregnant only a week ago? Did I really hold him?"...then it physically hurt everywhere...now I still hurt, but a little less. I cry everyday. I miss my son. I pray to God to help me through this. I struggle with my relationship with God daily. I want to be faithful, but it is difficult to be faithful to a God who felt it necessary to let your baby die. I know He has 'reasons' for everything that He does, or doesn't do, but there is no reason good enough. There is no reason good enough to take Aidan from me. God knows my heart and I have faith that He will walk me down this grief path and lead me in a new direction with my life...His direction....so here we go......

Love, Me.