Too Beautiful

I’ve always loved the song, “Beautiful” by Trampled by Turtles. Since the first time I heard it, it has struck a chord deep in my soul and moved me to tears even in the most ordinary of moments in my life. But now, like so many other things, I hear it entirely differently in this moment, in the after. In the after, this song is a song about Abel. Life now has two distinct parts: before Abel and after Abel.

The after Abel is searing…the after Abel looks and smells and sounds and feels so very different than the before. I wouldn’t go back though – not for a second – because as painful as the after Abel is, having Abel here was wonderful and I would never wish away that time. So today, Leap Day, his due date, I am working hard to focus on the joy of the time he spent with us, rather than the sorrow of his absence. It isn’t easy; there has been a lump in my throat since I woke up and the hole in my heart feels wide open, but as has been the case throughout this entire journey, Abel’s story is not one to be kept for ourselves, it is one to be shared.

In this spirit, I share the story of Abel’s 4 hours and 11 minutes of life…a life that, as described in that haunting Trampled by Turtles song was simply …

too short and blinding
and too beautiful
too beautiful
too beautiful for me.”
 

My induction began at 5:35 pm on Thursday, February 18, 2016, and, just as planned went slowly and gently so as to place as little stress on Abel’s body and heart as possible. Joe and my best friend, Kelly, stayed right by my side through every moment and my friend Holly was there to photograph it all. My parents were at the hospital from the moment we checked in, essentially, and several other friends and family members joined them in the waiting room throughout the evening…many of them pulling an all-nighter. My brother was on Haddie duty and they arrived around 2:30am (all reports stated that Haddie was a gem and relieved much of the tension, running around in her “p-jams” and sneaks, being her adorable two-year-old self). We didn’t know how quickly he would arrive and no one was willing to miss a second of his life. Joe and I were beyond grateful to know we were surrounded by the support and love of so many of our people.

After fighting through just over 14 hours of labor and six minutes of pushing, Abel Joseph Woodward was born into this world at 8:04 a.m. on Friday, February 19, 2016, weighing 3 lbs., 6 oz., and measuring 17 inches in length. I do not use the term “fighting” lightly, as the labor process was not easy on our little man’s heart. While I could hear his heart rate slow through the monitor, it wasn’t until much later that I learned how low it really dipped, at times dropping to the low 20s. But, as he had done all through my pregnancy, he fought on and was born making the most beautiful little cry. Babies with Trisomy 18 don’t typically have a lot of lung power, so their cries tend to be on the feeble side, and while Abel’s wasn’t terribly robust, it was loud enough for our friends and family waiting anxiously outside our door to hear. It was the absolute greatest sound.

He was placed directly on my chest and we all sobbed with joy – he was ALIVE!!! He did it!! He beat a major set of odds and survived through birth. I beamed with pride as I held my little brave man, and in that moment, nothing could have made me happier. The moment was fleeting, however, as Abel was struggling to breathe. My doctor took him and placed him in the care of the NICU team waiting beside the warmer. Abel’s Daddy stayed by his side as the doctors gave him breathing assistance via a CPAP, which essentially forces oxygen in an effort to keep airways open.

The treatment was effective and Abel was wrapped up and placed back in my arms within moments. He was given Apgar scores of 6 and then 8, effectively outperforming his sister on the one-minute score – Way to be, buddy!

I know I’ve said this before…but I could have held that little boy forever. His body was the sweetest, most delicately delicious thing I’d ever experienced (apart from his sister, of course).

Once Abel stabilized, we began bringing in our friends and family to meet him. Haddie was first, then grandparents and siblings and then the rest of our friends and family who were there. Since his status was so touch-and-go, I was hesitant to let anyone else hold him, and I don’t think anyone really wanted to ask to take him from me. Instead, I held him as close as possible while everyone came in and loved on both of us. The joy in the room was like something I’ve never experienced, and I’ll never forget that feeling. I cling to that feeling.

Not too long after everyone at the hospital had met Abel, he began to struggle. We cleared the room – with the exception of the medical team, Joe, Kelly and Holly – and attended to his breathing difficulties. Abel had his first apnea spell right around 9:00 a.m. For those of you who have never experienced apnea, the body simply stops breathing. For Abel, it was literally like the switch in his brain responsible for sending the message to his body to breathe just shut off. During that first spell, he didn’t breathe for approximately 30 seconds before the switch flipped back on, he gasped for air and let out the most heart-wrenching cry. It was terrifying. I felt helpless, as did everyone else, because we were, in fact, helpless. This was Trisomy 18.

As his breathing continued to stop and restart, my doctor told us that she believed Abel was telling us it was time. This was shattering – in an instant our hopes of bringing Abel home and having days or weeks or months to spend with him were seemingly dashed. Upon our request (and as we’d planned prior to his birth), Dr. Prosen grabbed a small cup of holy water and, at 9:05 a.m., baptized Abel right there. We learned through our preparations that anyone baptized Catholic can baptize a baby, and having our doctor do it felt quite fitting; she’d supported us through every step of the journey and was now supporting Abel through this sacrament as well. Together, Joe and I wept, held our baby boy, and said goodbye…

But then, as quickly as he’d seemed to slip away, Abel came back. I don’t recall exactly how long the apnea lasted, but Abel began breathing again – his eyes opened and his color returned. Our little “breathing spirit” was fighting hard to stay with us. We were elated, but it was also agonizing to watch him struggle.

Soon thereafter, at 9:20 a.m., our dear friend Mike, one of Joe’s best friends since childhood and a pastor, said a lovely blessing over Abel and our family at 9:20 a.m. Everyone who was there to support us, including several members of our care team, gathered around us and shared in the reflection and prayer. I held Abel close to my chest and prayed harder than I’ve ever prayed before.

A short time following the blessing, Abel had another apnea spell. It was just as scary as the first and we once more dug deep for the strength to let Abel go and say our goodbyes. I remember telling him that his auntie was on her way and to hold on just a little bit longer; my nephew had been sick and my sister-in-law was frantically racing to the hospital. He listened and started pulling through the spell just as she arrived. Abel once again showed us that he was taking the meaning of his name to heart – the switch flipped back on and he began breathing. We all let out a huge sigh of relief…he was still with us.

After that second apnea spell, Abel had the best, most alert stretch of his whole 4 hours, 11 minutes. He cooed and grunted and responded to the sounds of his loving family and friends. It seemed as though every time Joe would speak to him, Abel’s eyes would go searching for his Daddy – it was amazing – especially considering that most babies with Trisomy 18 have significant hearing impairments due to the low-set structure of their ears.

Hearing the doctor say, “He’s responding to you!” was among our proudest of moments. During this stretch of time, we got to do some really special things with Abel, including giving him a bath and feeding him. I recall Haddie’s first bath and how much she hated it; Abel, on the other hand, loved it. His little body just relaxed in the warm water and he gently grunted as we washed him. I have a video of my doctor commenting, “Just a regular day at the spa, huh Abel?!?” Haddie even got to help with the bath; it was a very proud big sister moment.

Once bathed and dried, we got Abel dressed in one of the outfits we had purchased him (which was preemie sized, yet enormous on his tiny 3 lb., 6 oz. frame) and had some beautiful photos taken by the organization, Now I Lay Me Down to Sleep (NILMDTS). NILMDTS offers professional photography sessions at no charge to families who have had a baby born still or who have a baby who is expected to die shortly after birth. We’d arranged this photo session through our social worker and I’m tremendously thankful to her for doing so. The timing was such that the photographer was there while Abel was still living, and we are beyond grateful to have those moments captured – when our family of four was happy and complete.

After his bath and photos, Abel showed some signs of hunger! This thrilled me as I wanted few things more than to be able to nourish his little body. With the help of our nurse, I was able to express some colostrum onto a spoon and feed him at 11:29 a.m.. He LOVED it and I can’t even begin to describe the feeling. Our little buddy ate two spoonfuls, which, for his tiny size, was pretty impressive. He grunted with delight and I laughed with glee.

Everyone started breathing a little easier after Abel ate. He just seemed to be doing so well. So well, in fact, that I’d finally agreed to eat something myself. I was even going to let my mom hold him while I ate my sandwich. I wanted so badly for her to have the opportunity to hold him, but just as I was going to place him in her arms, I saw the color in his face begin to change. There was a vein that started at his forehead and ran right alongside his nose that would light up blue when he was struggling to breathe. I saw that vein brighten and I knew we were in for another apnea spell. I kept him in my arms and alerted the pediatrician to his worsening condition. This spell, from the start, was worse than the others. Abel struggled more and his cries were weaker. He tried to fight, but his brain simply did not send the right messages to the right places, and his wee little heart was too weak to handle the stress of it all. In my gut, I knew it was time. Joe and I held him and cried over him and wanted so badly to beg him to stay, and to keep fighting. However, we couldn’t be selfish; we could see that it was just too hard, and we told him to let go, that it was okay, that he’d fought hard enough and could rest. The pediatrician announced Abel’s death at 12:15 p.m. Our hearts shattered into a million pieces.

Abel Joseph Woodward had lived for a wonderful, yet difficult 4 hours and 11 minutes. During that time we felt joy and agony, relief and pain. We were the happiest and the saddest. In the end, that extra 18th chromosome that inhabited each of the tiny cells in his wee little body made our son too beautiful for this world. His purpose simply could not be contained by his earthly body, as it turned out to be much more mighty than what could reasonably be confined by skin and bone. And, although I’m not there yet, I know some day that truth will bring me comfort; I know (because I’ve been told by those who’ve traversed this path before me), that I’ll be able to look back and be grateful for the 4 hours, 11 minutes we had with Abel. But right now, as grateful as I am, 4 hours and 11 minutes doesn’t feel like even a fraction of enough time, right now I just want to go back there, back to 8:04am – 12:15pm on 2/19/16 and hold my baby boy and tell him again how crazy-madly he is loved. I want him to meet the people he didn’t get to meet and see the things he didn’t get to see. His life was, indeed “too short and blinding.” Joe and I would do just about anything to get back to him, back to the before, but since we can’t, since we are stuck here in the after, we will strive every day to keep his memory alive by #believinginbabyw and working to carry his #weebutmighty legacy forward…

“Beautiful”
By: Trampled By Turtles

Weakened from the bottle
What are you fighting for?
Simple and subtle and lying
And too beautiful
Too beautiful
Too beautiful for me.

A massacre of timing

A shadow world at best
A life too short and blinding
And too beautiful
Too beautiful
Too beautiful for me.

No one saw it coming
And no one sees it still
Empty space and memories
Too beautiful
Too beautiful
Too beautiful for me.

And I’m scared that I… forget it.
I hate that life goes on.
The world so sweet and deadly
And too beautiful
Too beautiful
Too beautiful for me.

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2019-08-16T16:08:04+00:00June 19th, 2019|Families, NILMDTS News, Parents|0 Comments

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