Rigdon's Story

This is a story I wanted to share for a while, but it never felt like the right time. Today is Rigdon's birthday, so what better way to kick of the blog for 2018 than sharing about this preemie and his super sweet family. You've probably already seen many of these images on an old post (Remembering Rigdon), but this time they are accompanied by his entire story from beginning to end.

Rigdon's mom was willing to write her version of Rigdon's life story, and even found writing about it therapeutic. I can't even begin to understand the emotions Liz and Alan went through over the past few years, especially now that I am expecting a son of my own. I am so happy she shared this with me months and months ago, and I am thrilled to share it with you today. If you have a preemie or have lost a child, make sure to comment with your experience, emotions, and encouragement for this family.

If you want a sneak peak into Liz and Alan's next chapter... check out Bennett's Birth. Although Rigdon can never be replaced, this family was recently blessed with another healthy baby boy! 


Rigdon’s Story

 

 

"Though some days eternity can feel like forever, I know we will see and hold him again."

 

 

 

"Alan and I had always planned on having children. We never anticipated entering into the ‘infertility club,’ and we kept that part of our lives pretty private as we went through all sorts of procedures/testing, but that was our reality, and it was tough. I remember at one point tearfully praying that IF we were blessed with a child, I would do my best to never take them for granted, because I would know what a miracle he or she was—I had no idea how that prayer would be answered, but felt assured that child or no child, everything was going to be ok. I could never have imagined the miracles I was about to witness!

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We had been trying to get pregnant for a couple of years, and had undergone three IVF attempts by the time Rigdon came into our world. He was decidedly our final attempt through IVF, and we could not believe when we got word that we were going to have a little one! In fact, I don’t think I actually let myself believe it for many many weeks.

When you go through failed fertility treatments, you learn the art of being ‘cautiously optimistic.’ I didn’t share the news until about 20 weeks into my pregnancy, when I finally felt like it was ‘really happening,’ and I allowed myself to just enjoy it. That was a little short lived. The pregnancy was full of its own drama, and I had two episodes of heavy bleeding where I thought “there is no way our baby made it through that!” Both times, I remember sitting in anticipation, paralyzed with concern, waiting for the ultrasound, and both times, weeping with joy when we heard that heartbeat and saw him wiggling around as if to say “I got this. I’m not going anywhere.” I knew from the beginning he was a strong soul. The strongest…

I had just gotten home from my shift in the ER on Jan 21, 2016, and was getting ready for bed, when my water broke. I was completely stunned. I had just started feeling better with the pregnancy symptoms, and had barely started to feel movement; I couldn’t really process what had happened and honestly, I had no idea how our world was about to change. I think I subconsciously, and rather naively, thought “we got this, things are fine, our little guy has shown us he’s strong before,” and off to the hospital we went.

The next few weeks of bedrest are kind of a blur. I had ruptured at 21 weeks and 6 days, and there were a lot of conversations about the lack of much needed amniotic fluid for his lung development in particular, as well as the risk for infection. I had a couple trips to L&D, but the contractions would calm down, and the 3 weeks we were able to keep him in were filled with hope for just one more day for him to grow. We had goals to reach! Our first goal was 24 weeks; we never got to the next one.

During that time, I started thinking back to many years ago, when I had been serving as a missionary, representing our church in the Caribbean. One day when I was struggling with feeling tired, lonely, and dejected, one of the leaders of the mission there said to me: “We can do hard things.” There was more, but that phrase has always stayed with me. And that became our motto. We were feeling tired, often lonely and often dejected, but our little family, our little boy; whatever he would face -- could do hard things.

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3 weeks after my water broke, February 11th, Rigdon joined our world. He was a tiny 24 weeker, but was bigger than I thought he’d be. He weighed in at 1 pound 10 ounces and was just 12 inches long…but he looked so strong. The delivery was a bit traumatic, but I remember the seconds after I delivered him as being a moment where time stood still. The room was filled with people ready to act in our behalf, and as they held him there in front of me for a few seconds, despite the voices around me, I heard absolute silence. There was no cry. He couldn’t. I could just stare at that little boy for seconds before they whisked him away to intubate and stabilize him. I couldn’t see him, but I remember vividly the words the NICU team spoke as they surrounded him across the room. His heart rate was dropping,..they got him intubated..his heart rate improved.. The NICU doctor came to my bedside and tenderly placed his hand on mine and told me they would let me know when I could come see him and that they needed to take him then. I remember our exit from L&D without my babe in my arms. That was probably one of the first moments I truly realized the ‘loss’ we were experiencing, and would continue to experience time and again.

Our entrance to the NICU, was unlike our little tour beforehand, because now OUR little baby was in there. This was now our home. I remember seeing him in his little isolette, and wishing so badly that I could hold him; keep him safe, but also being terrified that I’d break such a tiny perfect thing if I touched him. Every experienced hand that worked with him seemed ‘too rough’ and I knew pretty quickly that this little boy now totally owned his momma. I was going to be there every minute possible to witness his life, support him, and protect him. I felt a growing weight of advocacy I had not understood before. We never wanted to leave! (Though I am sure many times the staff wished we would) We grew more and more obsessed with him everyday and if we wanted to be with him, then we had to be there in the NICU, so we were there in the NICU. We didn’t care to be anywhere else.

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He is our miracle. He lived in that NICU for 7.5 months (230 days) and our sweet NICU family had become a quite literal family. They will forever be a part of us! They were there to witness every moment by our side. Every milestone was a miracle for us… The first time he opened his eyes, (His eyes were still fused shut when he was born; it was a literal miracle to watch them open in front of us), his attitude with always wanting to kick his feet out of his swaddle, the first feeding, the ridiculously long baths because I was so new and he was so tiny, when he finally weighed enough to wear clothes, moving to an open air crib, and of course, the way he loved to kangaroo. Those are such precious memories that are now shared with people who understand the significance of those miraculous moments in our lives. With as hard as it can be to have the hospital be your home, there are some joys unique to the experience, including having witnesses to every single accomplishment your baby achieves… all rejoicing with you because of how much they love him.

For every moment of pure joy, it seemed we had multiple moments of anguish. Like most parents, we held to the belief that if he could ‘just get through’ whatever had knocked him down this time, then we could get back to working towards healing and home. Every day was one more day of progress, but there were a lot of setbacks. There were nights we stayed by his isolette all night, for fear of missing our last moments with him. There was rejoicing in the morning when he had made it through the night. There was worsening eye disease until he finally required laser surgery. Then there was recovery. There was infection on top of infection and so many blood transfusions, medications, and drips… all within the first 3 or 4 months of his life. We worried that his body never seemed to have time to grow those lungs that were so very weak and underdeveloped. That became our focus of concern. He didn’t seem to be improving as expected.

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Rigdon was growing, but his lungs were struggling. He had been tried on CPAP 3 times, and the final CPAP trial lasted 5 days. He was re-intubated on Easter Sunday at 6:45 pm. I remember clearly the moment he was reintubated, because I heard his tiny little lamb like cry as they removed CPAP to place the tube. I only heard his little voice for seconds, and then there was silence. I never heard that little cry again.

He couldn’t seem to get off the vent. Then came the tracheostomy. We had spent months hoping he would grow enough not to need a surgical airway. It scared us—not because we couldn’t care for it or him, but because of what it meant. We were so scared about his future, but knew that our miracle baby had fought hard to get to where he was, and we were going to keep supporting him. As long as he was fighting, we would fight right there with him. We chose faith over fear, and he got his trach and G-tube placed in June. There was about a week of recovery with paralytics, pain medicine, more drips, and, of course, infection. It unfortunately, was a setting we had become familiar with. Nothing came easy for our sweet boy, but if I could define strength, it would be him.

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When he came back from surgery, I was mesmerized by his now fully visible face and spent hours staring at him in his crib. I could now see all his features without tape and tubing getting in the way. He was a perfect angel baby! I became instantly grateful for the trach because I felt I was experiencing an entirely new Rigdon! The weeks leading up to the decision were so hard; filled with heartache and a thousand questions—I had no idea I could feel like I was getting back somehow a more ‘complete’ baby, when I was so focused on what I felt was being taken away. The days and hours always felt long, but time was still passing. We watched many many babies come and go from our little part of the world. We went through cycles of sadness, anger, and hopefulness as we went through multiple ‘roommates,’ often feeling a little left behind. Our tiny little miracle boy had somewhere along the way turned hefty, which served as a reminder of our seeming lack of progress, but also, growing right along with him was the deepest, greatest love we could ever imagine. In being honest, we definitely went through moments of jealousy for others’ babies and the progress they were making, but also found great joy in learning that loving and rejoicing with others did not diminish our own situation or triumphs. And that was a big lesson to learn.

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Through our extended time in the hospital, I would say my best advice is that we simply cannot compare! That’s the hardest part of having to go through this experience, I think. We want to know the end from the beginning; we want to know how it all turns out, and we find ourselves living for/in the future instead of in the miraculous moments right in front of us. It’s human nature to want to know what’s going to happen, so we try to find others that are ‘just like us’ and somehow use them as a mental guide. We try to compare our struggling child to others’ good outcomes to bring us comfort because “so-and- so went through this and they made it home—so we will, too.” It’s something even well-meaning friends do. “I knew someone that had a baby just like yours, and he/she is completely healthy and you would never know it!” Although, that may be the likely outcome and is meant to give hope, you just never know what is in store for you, and that takes its toll on the heart. Life becomes a constant struggle of balancing hope, realistic expectations, and the ever present gnawing sadness that accompanies watching your baby fight such a battle, and wishing you could do something more.

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We had to learn that each and every baby is so individual; there are no comparisons. Nobody can tell you for certain what your outcome will be. You just go through it with faith and hopefulness and take things one day at a time, finding the miracles in everyday moments. We had to learn to “let Rigdon do Rigdon.” Learning not to compare helped us to be able to focus on our own little one and rejoice in His triumphs, regardless of what others were doing the next pod over. It also helped us to be able to reach out and form friendships with others because we no longer saw them as “comparables,” but as individuals with their own individual struggles, fears, and joys. Those friendships have meant so much because a natural byproduct is even more people to love our babies! Of course, there were hard days where we didn’t want to be the friendly veterans, we didn’t want to be in the NICU ‘club.’ Nobody does. We just wanted our turn to take a healthy baby home… But overall, I could never fully describe the love and sacredness of our time experienced within those walls. That was home for us.

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Discharge day finally came! I cry every time I think about that day. Truly, there was no better day than the day we took him outside those hospital walls to come home. The amount of equipment required for him was daunting, but was completely overcome by our excitement and desire to watch him soar. He was as stable as possible, but not in a great place to be honest, and we really felt like if we could just get him home where he belonged, then he would begin to really thrive. We dreamt of our walks outside, getting him up from his crib in the next room, playing by our big window on the floor of our living room... we didn’t want to take a single moment for granted. We wanted him to experience being surrounded by the peace of being home, and we will cherish forever the time we did have to give him that.

Rigdon loved being home. We knew it. And We loved it even more! That’s why it was so heart wrenching to see him start to decline. He required more support and we had to experience many parents’ worst nightmare of having to resuscitate your own baby. We knew we had to go back. About 3 weeks after getting him home, we went back to the hospital, this time at LCH where his pulmonologist was, and we were there to stay.

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We went to the PICU, and spent the next few months watching Rigdon continue to fight infections, and make small progresses only to be followed by large setbacks. He had been put back on the hospital ventilator and could not seem to tolerate a home vent again. We often said that we hated having to be there, but there was also no place we’d rather be. We were blessed, once again, with wonderful care-- such great love and dedication to our babe. We do not doubt for one second that he was cared for by the best throughout his life, and offered all there was to offer in his behalf.  Still, it was hard being away from our NICU family, who knew him so well, and having to develop new relationships with the PICU staff. Turns out, it just added to our growing tribe… I remember it was so hard to try and explain how and why Rigdon had changed and was worrying us. They didn’t know him yet, but that didn’t take long to remedy. He stole their hearts pretty quickly and he had a brand new audience to swoon over his every smile, hand hold, and expression. We saw him laugh for the first time there! It actually scared us at first because the alarm on the vent would go off from the increased pressure, but when we realized he was laughing, I mean, you can’t describe the swelling that happens in your heart! He even had his first and only taste of baby food there (pears). We felt our little room at LCH had become a special place, made special by his sweet spirit, and people loved to come and spend time there with him. (That made it just a little easier, knowing he was being well loved for the times when I couldn’t be there.)

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The holidays approached and we knew he was nowhere close to where he needed to be to return home. As had been the case many times before, we were told he was not progressing as expected. We weren’t sure why he wasn’t improving, but kept holding on to the hope that he could overcome his BPD with more time. That timeframe kept getting longer and harder for him. Christmas week was actually a really good week for him, and I think that was a blessing meant just for me. We had a beautiful family Christmas and even took our first family photo to include our surprise miracle baby #2! After being told this would likely never be a possibility for us, we just knew this was another miracle in our lives, and a purposeful blessing given to us for a reason.

Two days after Christmas, Rigdon started to really struggle, and by New Year’s Eve, he was in really bad shape. He had never been like this before. Things were different this time. He was placed on paralytics, the oscillator, multiple sedation and pain meds, and for the next couple of weeks, we watched for him to show us he could get through this once again. The months had been difficult, but he always seemed to have just enough strength to get through. He’d never quit fighting, but this time seemed to be too much for his body. We had been living in his room with him during those final weeks, and when he passed, we held him as tightly as we could physically hold him, as we watched our beautiful miracle baby boy slip away. We found out we were having another baby boy just days before Rigdon passed away.

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There is no replacement for our perfect angel boy, and there is a constant throbbing and loneliness for him that I am having to learn to live with now in my heart, but I can say with certainty that his life was full of purpose and we wouldn’t trade a minute of our time with him. He has forever changed us (I hope for the better), and our family, and pretty much everyone that ever knew him. We didn’t get the outcome we hoped for, but the influence of his life continues to unfold in front of us daily. I can say we never took him for granted, as I prayed so long ago, and am so grateful for every long day and night with him… every memory still feels so raw, so fresh in my mind. There is no “moving on” when it comes to missing your baby.  Only moving forward. And sometimes, like Rigdon, I feel I am doing that on a sliding backwards slope. BUT – there is meaningful purpose in his life and that helps as we find the joy of having learned to love so deeply and the blessing he is and forever will be to us. I hope to be able to help other moms feel some sense of comfort knowing that I know, with faith and through experience, that we really can do hard things, whatever the outcome, and it will be ok."