the Odd Kouple

The birth of Aiden John was one of the most beautiful moments of my (Nikki’s) life.  Though he was very small, he took up an awfully big space in our hearts and in our lives.  And though he never took a breath on this earth, he will forever be a part of the fabric of our lives.  Little Aiden was absolutely beautiful and I will never forget the first moment I saw him and got to hold him.  He had 10 little fingers and 10 little toes.  He had his father’s forehead and his sister’s perfect little mouth.  He also had nearly as much hair as she did when she was born.

We were so grateful to the medical staff at Central Georgia Medical Center.  They took really good care of us and allowed our family time to meet baby Aiden.  My favorite moments were watching Natalie with him.  We let her have complete control over how close she got to him.  At first, she just wanted to look at him while sitting in her Papi’s lap.  Then she touched the blanket that he was wrapped in and then gave him a little tap on his nose.  Then all of a sudden she wanted to hold him.  It made my heart feel so warm to see her being so gentle and loving to her little brother.  We had a rag that was there to dab a little Aiden’s nose because he was having a little bit of a nose bleed.  As he was passed from one family member to another, the rag would easily be forgotten and fall to the floor.  Every time, Natalie would pick up the rag, hand it to the person holding Aiden, and say, “That’s Aiden’s!” She was so proud to help take care of him.  And I was proud of the way she loved him.  I also felt so sad that I would not get to see how she would be a big sister to him.  That is something that I will always wish I could have seen.

After the family left the hospital, we hung around to wait on the funeral home to come and get Aiden.  Letting him go that night was the most difficult thing I have ever had to do.  There was no way I could prepare for it and to be honest I thought I might literally break in two as I did so.  I don’t really know how we managed to do the things that we had to do that night—all I do know is that I didn’t do it by myself.  I know this because I wasn’t capable of doing it by myself.  Daniel and I both had someone carrying us through it, making it possible for us to take each step as we had to take.

And that is how the last five days have been.  For me, they have been a blur, but I do know that there have been all kinds of people around, taking care and loving my family and me.  I hope to write down some more of the things that have happened over the last several days.  At first we didn’t think we would see Aiden again, but we were able to see him a couple more times and that was a wonderful gift.  I will write more about all of it soon.

Though we continue to hurt deeply, we find ourselves so grateful for all of those who have helped to make this all a little more bearable.  We are grateful that God has given us friends and family who can so tangibly show us God’s love and compassion.  It is these gifts that have and continue to carry us through.

Thank you for your prayers and words of comfort.

Daniel, Nikki, and Natalie

Tags: Aiden, edward's syndrome, Family, Natalie, trisomy 18

I know that there has been a lot of anticipation to hear how everything went at the hospital.  We thank everyone for your prayers and concerns.  We felt so much warmth from that support.

After 9 and a half hours of laboring, Aiden John Hardeman finally joined us in this world at 12:23 am on December 25th.  He was 2 lbs 11 oz and 15.75 inches long.  Between the two hospitals (Coliseum and The Central GA Medical Center), Aiden was the first Christmas baby in Macon this year.  However, we do regret to inform you that he did not survive the birthing process.  He was stillborn when he joined us. 

The laboring process was short, yet difficult.  But the hospital staff was phenomenal in how they cared for us.  We were able to let all of the family that was in town visit with Aiden.  In addition to this, we were given a significant amount of time for us to hold and love on him.  For this we are so thankful. 

Around 5:30am we did one of the most difficult things that we have ever done.  It was time to let go.  We said good bye to Aiden John for the last time.  We passed him on to the funeral home and were released from the hospital. 

Thank you again to everyone that has supported us through this.  It may be difficult to view, but I have included a family picture with Aiden.  Thank you and we love you all! 

Tags: Aiden John, christmas, edward's syndrome, trisomy 18

It appears to be that time. We are now in the hospital. Nikki is between 3-4 cm apart and Aiden appears to have dropped. Aiden has decided he wanted to be a Christmas baby! So please keep us in your mind and prayers.

Many people have checked in and asked how we are doing.  We are so grateful for all of your concern.  The best answer is that it depends on the moment in which you ask.  Over all, Daniel and I are dealing very well.  We have so much support with each other and around us, that we are able to walk this journey somehow.   In all honesty, there are moments when we both wonder if we can really bear this.  There are moments I think, “I had no idea I could hurt this much.”  We both find ourselves pretty exhausted by all of the emotions and grief we are experiencing.

At the same time, we keep putting one foot in front of the other and walking through.  We love our time with Natalie and she continues to bring so much joy into our lives.  She is such a healing presence for both of us and we continue to be delighted to watch her grow and learn.  She is quickly becoming a very independent little thing and wants to do it all herself.

Most recently, I have made the transition to stay home with Natalie and it is going really smoothly.  We are still looking for a rhythm, but I doubt it will come before the holidays are over.

Thank you again for walking this journey with us.  We are grateful for the companionship.

Thank you also to those of you who have reached out to us as parents who have lost infants.  We have struggled to have the energy to respond, but look forward to connecting with you when we feel we are able.  Right now, we are focusing on things closer to home, but hope you will still be there when we do need to talk.

Holding on tightly,

Nikki, Daniel, Natalie, and Aiden

Tags: Aiden, edward's syndrome, Natalie, trisomy 18

Last Friday, Daniel and I had the opportunity to meet baby Aiden in the virtual world. It was so wonderful for both of us to get to see a clearer image of him. He is a cute little fella and we wanted you to get to meet him also. If you are so inclined, feel free to watch the video below and meet Aiden yourself. The video is about 10 minutes long and the first 3D images don’t come until about half way into it. Also, the best image comes in the last half minute. Watch as much or as little as you want. Thank you for sharing in both our joys and our sorrows on this journey.

It was really helpful for me (Nikki) to learn some things about our little Aiden. He is smaller than he should be at this point. On average he’s measuring around 27 or 28 weeks when he is actually 32 weeks along. This was not a surprise to us—we had been told that he would be small. He also seems to weigh about 2.7 lbs when most babies at this point are closer to 4lbs. As much as we don’t want him to be small, it helps me to have more information. We also learned that he may be having a hard time swallowing. We know this because I have a lot more fluid in my belly than I should right now. He should be helping me out by swallowing some of it, but many T18 babies are unable to do this and it causes a build up of fluid for the momma. This is not dangerous to me or Aiden, it just makes me more uncomfortable. It also means that he has a great big swimming pool to swim around in right now and I look more pregnant than I really am.

We hope you enjoyed meeting our little guy. We can’t wait to meet him in person.

With love and gratitude,

Nikki, Daniel, Natalie, and Aiden

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Tags: Aiden John, Daniel Hardeman, edward's syndrome, Nikki Hardeman, trisomy 18

Families are very interesting creations.  Some may be in full disarray from run of the mill bad luck like the Griswold family, others may be falling apart at the seams like every soap on lunch time television, yet others seem to strive through trials and tribulation regardless of the situation…like the castaways on Gilligan’s Island.  (They may not have been blood relatives, but after spending that long on an island with someone else without deodorant will make you family…I digress).  But from each of these families or with individuals within these families stems love that builds faith and gives hope that everything will be ok in the end. 

Due to our current situation, it seems that hope and faith are hard to come by.  But Nikki and I are reminded everyday that our family provides the love that will help sustain these feelings and beliefs.  As I look at my family I can’t help but be overcome with joy and fond memories of things of old and things to come.  Not to mention the time we live here in the present.

We must remember how much family truly means to us.  The central heart of the family will continue to strive if you allow love to feed your faith and hope, regardless of the circumstance.  We thank each of you for the support you have given us.  Now I ask that you provide that same support and love as you keep the rest of my family in your prayers. 

What I have come to realize is that family hurts for us along with their own feelings of grief.  As we deal with our tragedy of Aiden, we have come to realize that our parents are not only hurting due to the expected loss of a grandson, but doubly so as their own children suffer.  This is a beautiful yet difficult thing. This rings true for our other relatives.  Whether it be a sibling hurting for us as they watch us through this or best friends who want to relate, but have never walked in our footsteps.  Everyone around us hurts. 

But I am reminded today that life is beautiful because of this.  Today my family mourns together as my grandmother, Faye Dalton (more affectionately called Ma-ma), has passed away.  She was just shy of her 96th birthday.  She meant so much to us as no matter what part of the world we lived in, we always knew we could return to Ma-ma’s house for great southern cooking and an old fashion tongue lashing if I didn’t sit up straight.  We couldn’t help but love her.  And we hope to have the same resilience as she showed in life. 

I am reminded of the time that she was working in her garden and was bitten by a rattle snake.  At around 76 yrs old or so, she refused to go inside to have herself taken care of until she took the time to find the snake and kill it to protect everyone else.  Once she finally let someone know what happened, they rushed her to the emergency room where she sat patiently and quietly for almost three hours before being treated.  It was a good thing that snake only had one fang.  For its sake I imagine it wishes it had both as it may have won that battle and not ended up as a snake skin souvenir on her dresser.  

This is only one story of many that we have of her.  But a few of the things that we know we could always count on were picking our birthday lunch menu, sitting out on the front porch playing the car color game and hearing bed time stories as we fell asleep.  I even used one of her children’s stories in a high school public speaking class to get an A+.  (It was a great story!)

I can’t imagine everything that she has seen in her 96 years.  My how the world has changed.  But one thing that always remained the same was how Ma-ma celebrated life with her family.  So, as a family we celebrate her life and how she has touched each of us.  We do not mourn with heavy or empty hearts, but rather full and joyous hearts.  All because of a beautiful life that we were blessed to have been a part of. 

Thank you Ma-ma.  May you Celebrate In Peace.  We love you and will miss you dearly.  Nikki and I also know that as you held Natalie when she was born, you will also hold Aiden when the time comes.  He couldn’t be in better hands. 

With much love and celebration,

Daniel

P.S.  Please keep my other grandmother and my whole family in your thoughts and prayers.  Grandmama is also currently struggling with her health and is going in and out of the hospital.  This is a lot for my parents and their siblings to have to deal with right now.  And for the rest of us, we both mourn and hurt for them.

Tags: faye dalton, Hardeman, life, memorials

I realize it has been a while since I graced the cyberspace of our blog.  It has been almost a month now since our last update but have found it difficult to find words to express what is going on.  Over the past month I have spent a lot of time keeping busy, not really thinking about what we are facing.  For me I believe it has been easier than for Nikki as she never has a chance to “step away” from the situation at all.  This is both a blessing and a curse as she gets to be present with Aiden every time he kicks or moves, but has to constantly be reminded of the inevitable.  For the latter, I wish I could bare part of that burden. 

Yesterday was especially difficult as we finally took the time to sit down face to face with a funeral home to start the planning process that we dread to think about.  However, it wasn’t nearly as difficult as I expected.  We were stunned by the sincerity Snow’s Memorial Chapel offered to us.  They were calm, gentle and willing to answer every question we had and some.  It was comforting to know that Aiden would be in good hands when the time comes.

One difficult time I personally had came when they offered to show us the casket.  I knew that this time would come.  I agreed to it so as not to be surprised later on.  When he brought it in I could only look for a short time.  Having to picture my baby boy in there was gut wrenching.   Not knowing whether I would have a chance to tell him how much I love him or whether he would even get a chance to see who is Papi is makes me realize that NO parent should ever have to face this.  For those that have and those that are suffering through it now, I mourn with you. 

Later that night as Nikki and I lay in bed, she reached over and pulled my hand to her beautiful pregnant belly.  She told me to keep it there for a minute.  Before too long, there was a kick to my palm.  Then some movement near my fingertips.  Aiden was moving around and was giving me a chance to feel his touch in that moment.  It was as if the world had stood still for me right then.  Nothing else mattered.  My boy was there, with me.  For the first time…I knew my son. 

Throughout the next 10 minutes I didn’t move my hand.  I cried tears of joy and sorrow hoping to have a chance to hold him alive, but feeling satisfied to know I got this opportunity to feel him playing in the womb.  There are so many “firsts” that I wish I could show Aiden.  But this touch, this first time connecting with me is one that I will hold on to forever. 

Daniel

Tags: Aiden, Daniel, funeral, Hardeman, Nikki, t18, trisomy 18

In my (Nikki) line of work, I have often found myself offering words of prayer and comfort to others who find themselves in crisis kinds of situations.  While these comments have always been sincere, I did not really understand until the last several weeks  how important those words of concern are in times of trouble.  Over the last several weeks, Daniel and I have felt ourselves being carried through this difficult time by the prayers and thoughts of people who love us dearly.  The news we have received about Aiden is the most painful news either of us has ever faced and we wondered how we would survive it.  We are learning that we are getting our strength from those of you who have agreed to share some of your energy with us in prayer.  Neither of us has had much energy to say thank you for your expressions of concern, but we do want to say thank you from the bottom of our hearts.  Each email, each card, each call, each comment on our blog has been another hand holding us up and carrying us through and there are not adequate words to express what you have all meant to us.

As for an update, there isn’t too much.  I have been to the doctor and very little about my care will change at this point.  There really is nothing they can do until little Aiden gets here and even then what they can do will be minimal.  Mostly, we are just learning how to live in the space of not being able to do much.  We will not know how bad his condition is until he gets here.  We are trying to figure out how to live with hope but also the realization that our son will not live long even if he makes it to term.  This is a very hard thing to do.  I will have at least one more appointment with the perinatalogist and we will meet with a pediatric cardiologist around 28 weeks.  We are also hoping to meet with a neonatalogist and we are going to be looking for someone who specializes is this chromosomal abnormality.

All of this is so new to us and we are taking it one step at a time.  Thank you again so much for your love and concern.  We are so grateful for your care.

Daniel, Nikki, Natalie and Aiden

Dear Friends & Family,

As announced last week, we chose for personal reasons to have the test done
to determine whether Aiden had Trisomy 18 (Edward’s Syndrome) or not. The
test was completed on Thursday September 24th. We received the results of
that test Monday Sept. 28th.

We are sad to report that the test came back positive. Aiden John does
suffer from T18. This is devastating to us as we obviously had hoped to
bring you better news. At this time we are trying to process this new
information.

Thank you all for your prayers. Please continue to remember Aiden as we
speak with doctors and specialists on our next steps from here.

With heavy hearts,

Daniel, Nikki, Natalie & Aiden

I just wanted to let everyone know that the procedure went smoothly. We should know something at the beginning of next week sometime. Thank you so much for your prayers and expressions of concern.

Tags: Aiden