Memories for Sam

Today marks two years since we said goodbye to our son, Sam. To help remember the impact he continues to have on our lives, I wanted to highlight our fondest memories over the past twelve months - sharing them with Sam for him to experience as well.

The news, social media and most conversations are dominated by negativity, brutality and doubt these days. But let us not forget there is more good in this world than we give it credit for; here are some of my favorite moments of 2017.

  • Charlie learned to crawl, and immediately took advantage of his newfound freedom
  • John truly began having conversations with us, I don’t think he’s stopped talking yet
  • We visited John and Charlie's great-grandmother and great-aunt in Florida
  • Marching in the Walk for Babies and having 70+ friends and family join us. We wrapped up fundraising and contributed in excess of $43,000 to March of Dimes’ research efforts
  • We said goodbye to our first home and turned the keys over to a young couple that remind us of our start in that house on Merrell
  • We moved to our new house and have a clean slate to begin making it a home
  • Our new neighbors welcomed us with open arms. We met their children, chickens and quirks; they are all good people
  • Charlie took his first steps in our new home
  • The boys started a new school together; they get to see each other on the playground and wave
  • John played his first season of soccer as a member of the Goaldozers
  • Charlie started talking; not much cuter than him saying “yes please”
  • Allison and I took the boys to New York City and showed them our old neighborhood
  • We hosted Thanksgiving and eventually Christmas at our home
  • Charlie turned two years old and we celebrated with dinosaurs
  • John began asking about Sam and wanting to learn more about his brother

Sam is always with us in spirit, but especially today. We remember getting to see his sweet face and feel him nuzzle into us when being held. I imagine what life would be like with him here, even better than it already is with John and Charlie.

It is difficult to reminisce and ultimately revisit the pain and sadness that came with losing Sam. But I am still so very thankful we got to meet him at all.

We love you Sam. We miss you more than anything.

-Dad

One Year

A lot can change in a year - we now know that more than ever. Today we celebrate the first birthday of our son Charles James. Such a bittersweet day, but one we look forward to repeating each November.

Charlie is such an amazing kid. So different than his older brother, John, but a perfect fit for our family. Seeing his toothy smile always helps wash away whatever stresses the day may have brought.

Charles, Charlie, CJ, C, whatever we may call him has challenged us day in, day out. Tested our fortitude as we spent 63 days by his side in the NICU. Pulled every nerve as we maintained oxygen tanks and monitoring for three months after he was out. Forced us to doubt our parenting skills as he faced developmental stages differently. And required us to drop our guard and treat him as any infant once he made it past known health issues. The challenge was worth every second of doubt and every night of wide-eyed restlessness.

It is an odd feeling to look through a history of pain to realize such joy for your child. Some of the innocence was lost raising Charlie, but we continue to do our best to ensure we maximize this gracious life given to Allison and I.

John and Charlie were fast friends and seeing the love they already have for each other is the biggest reward for which we could ask. They love to put their faces as close as physically possible to each other, we can only imagine what is going through their minds. Sure will be interesting when they are able to express their feelings in true boy fashion.

We are so proud of Charlie and celebrate every minute we get to spend with him. We get to raise one where there should have been two, but in our minds to know Charlie is to know Sam.

Happy birthday Charlie, we hope you already feel that you are special - one day you will know why.

Happy birthday Sam, we are special to have known you even if only for 26 days. Not a day goes by that we don't think about you. We continue to wonder what you would have been like, but know you would have been great. You will always be our sweet Sam and we will always be your Mom and Dad.

Happy birthday boys. We love you both.

Father's Day

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Today is a reminder for me, but I am reminded every day. I'm the father to three beautiful boys. Two are here with me, squirming when I hug them for a little too long, laughing when I find their ticklish spots and crying when they forget to take a nap.

But one is only in my heart. I think about Sam every day and often at the most unexpected times. One place I almost always think of him is on a plane. Something about the isolation of my thoughts brings me back to the one I won't be able to FaceTime that night from the hotel or receive a running hug from when coming in the door.

We continue our busy lives and face the challenges head on. But life will never be the same when every event and celebration reminds me Sam won't be able to experience the same. That is my burden and I'm one of many fathers and mothers who carry the grief of their children no longer being with them.

So a reminder to us fathers, hold your children close today and every day. The memories are worth the time away from other distractions. When I am hit by the wave reminding me Sam is gone, I remember reading him Charlotte's Web. I remember telling him about the world. I remember describing how great his mother is and how much his family loves him. I remember holding his tiny body. I remember kissing his fuzzy head. But most importantly, I remember.

What to Say

One thing Allison and I have learned over the past six months is how to be on the receiving end of concern, outreach and offers of help from family and friends. Something I now realize I was not very good at, how to respond to those I know have suffered loss or setbacks where I have no personal experiences to relate.

I stumbled across this article today and thought it had some basic and effective tips. I know I can continue to use them when relating to others who face their own challenges.

“But what can you say to someone who has lost a child? “I am so sorry,” is a start. And, we have discovered, it is also possibly all there is to say. There is just not much else to speak of. At least, that’s the way we feel.”

Loss Lasts Forever

"There will never come a time when I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime."

Everything in this article relates - beautifully written and expressed. 

7 Things I've Learned Since the Loss of My Child

Charles James

I wanted to give everyone a long overdue update on our Charlie bear.  He is now 35 weeks gestational age and has made a LOT of progress in his 7 week NICU stay. At birth he weighed 2lbs 11oz and as of today, he is 5lbs 5oz.  

At 33 weeks he got his CPAP mask removed and was put on a nasal canula with oxygen.  The nasal canula is much less intrusive and it has made CJ a happy kiddo.  Today they are switching him to a micro flow canula of oxygen and they will slowly begin the process of weaning him off oxygen.  The goal would be for him not to have to come home on oxygen but if needed they will let him in order to get him home sooner rather than later.  I have high hopes he will wean just fine and not need anything.  

He recently got out of his covered isolet and into an open crib at about 33.5 weeks because he learned to regulate his own body temperature. I can now have fun dressing him in cute premie outfits and swaddling him.  

Breastfeeding started at 33 weeks and is going very well. He latches very well and has not needed extra milk through his feeding tube after each session.  We did 2 weeks of exclusive breastfeeding to get him used to it.  If I wasn't there for feedings he was fed through his tube.  They introduced bottles of my breastmilk on Tuesday for when I am not there for feedings. He has done great so far on taking the bottles but just needs to learn to pace himself a bit. They give him 30 minutes to finish his bottle and whatever he does not finish is fed to him through his tube.  Once he is able to get all his nutrition from breast or bottle and gain weight, his feeding tube will come out and that is a huge step on his path to going home.  Charlie is battling bad reflux that will slow down the process a bit but he is learning to deal with it better each day.  Reflux is very common in preemies and will improve as his body matures.  Breastfeeding has been a wonderful bonding experience but it has made my time away from Charlie so much harder, I miss him like crazy when I'm not able to be there.

We are still dealing with his pesky PDA that we told you about in "their story" but he is not showing any symptoms so the plan is to continue to follow-up.  After discharge we will work with a pediatric cardiologist until it closes on it's own or they decide to intervene surgically through inserting a catheter in his femoral artery.  Either way we will press forward and the docs are still hopeful it will close on its own.  

With all of this going on, you would think I wouldn't be struggling with this next change so much but I have.  Last Friday, Charlie was "promoted" to South Hall.  He had been in North Hall since birth and these nurseries are for the smaller, more critical babies, typically born prior to 33 or 34 weeks.  Once those babies get bigger and more stable the normal process is to move them to south hall and begin the 2-4 week process of preparing them for discharge.  This should have been music to our ears but it was very bittersweet.  Throughout our journey we built very close relationships with a few of the boys' nurses and they knew us all so well.  Amazingly they could make an extremely clinical setting feel like home.  While these nurses are still around, they do not work the south hall so the last few days have been like starting over again.  I actually cried the other day because I missed our nurses and wanted to be back on the "other side".  Odd, right, but when you have been there for so long and been through everything we have, you hold on to the few things that make you feel comfortable there.  While the new nurses and setting are very nice, they just aren't what we knew and they don't really know our story.  Now, more than ever, I am just really ready to bring Charlie home and never see a NICU again. Each day it is getting better and I'm sure with a few more days, we will bond more with some nurses in our new area but right now the change is causing a bit more stress than excitement. 

Overall, Charlie continues to amaze us with his strength daily.  If he continues to progress on his current track, the hope is that he will go home by the end of January. We will keep posting pictures and updates and we appreciate everyone continuing to keep sweet Charlie in their thoughts and prayers. 

Time

It has been three weeks since we lost Sam, it feels like it was just yesterday. We hopefully have only 3-4 weeks left of Charlie being in the NICU, it feels like forever. Time is fickle like that. I constantly find myself looking at a calendar and trying to comprehend how slowly and quickly days and hours have come and gone since October. I am ready for the light at the end of the tunnel to quit getting smaller – I’m ready for us as a family to be out in the open again.

We cremated Sam on January 4 – I made sure to be there to say goodbye to him and see him off. I needed the closure of it all. We wanted to always feel his presence at our home and for him to be with us forever. We chose to have three small collections of his ashes separated. One will go in the front yard of what would have been his home, under a new, strong tree to be planted this spring. The remaining two will be given to his brothers, John and Charlie, once they turn 18 – hopefully they can take Sam places they would have loved to show him and celebrate him as they choose fit. The main vessel will remain with Allison and I forever, always close by to remind us of his impact and our love toward our little boy.

I went back to work last week for the first time in over two weeks. It was extremely difficult to remain focused throughout the day and I was massively behind on items. It was also a challenge to navigate conversations with my coworkers. Who knew about Sam? Who didn’t know but wanted to check on the twins’ status? Who just wanted to ask me if I had a good holiday break and if I did anything fun? I have never been so short to people who were honestly just seeing how things were either out of genuine interest or habitual politeness. By day three word had spread enough that I was getting empathetic looks from across the way as I walked through the building. Those three days weren’t over fast enough.

We started formally making our guest room into John’s big boy room this past weekend. It is both exciting and devastating at the same time. There were supposed to be two cribs in this room – not just a twin bed. But, we have already filled the space with toys and books and plenty of room for John and Charlie to reenact their favorite Mickey Mouse Clubhouse scenes or have a wrestling match. It will be a happy room, fit for a toddler and his little brother to get into as much trouble as they can muster. We hope to have both rooms ready within the next few weeks to ensure Charlie has a safe and loving place to come home to.

Allison is a stay-at-home mother now and adjusting. She has been steadfast in her dedication to Charlie and is pouring her heart and soul into breastfeeding and caring for him at the hospital. The fifteen minute drives to and from our house can take a toll, but she pushes forward to ensure he has the best available care and love from his mother. I continue to be impressed with Allison’s tenacity and I love her more every day. She celebrated her birthday last week, it was hopefully the hardest one she ever has to go through.

All-in-all, time is something we have a newfound respect for after the past few months. It can go by in the blink of an eye when things are right in your world, and it can come to a screeching halt when not. All we can ask for is as much time as possible with our family and friends and as few minutes as necessary for the times without. I know I will keep looking at the calendar, I’m just ready to have a smile on my face when I do.

-AML