This is my retelling of Dylan's 6 Days, taken from my blog. Though my memories grow more and more hazy, reading back through all of this still makes me tear up every, single time. Some days, I still can't believe that this is our story and that our son died.
Wednesday, June 11, 2008
Our first son Dylan Gabriel Brooks was born at 6:25 PM on June 11, 2008. The operating room experience was, in one word, bizarre. The lights were all aimed at me like some kind of sci-fi movie. All the doctors' and nurses' faces were covered with masks. It felt like there were hundreds of them. They placed a sheet coming up from my chest to cover my line of sight. I assume to keep me from seeing myself cut in half as well. They let Justin back into the room.
The doctor did an initial cut to make sure I didn't feel anything, and then he proceeded to bring Dylan into the world. Not 10 minutes after he started, they put Dylan up over the curtain so that we could catch a quick glimpse. He was 4 lbs 10 oz, a little gooey, alien-looking creature. Then they quickly whisked him away so that he could be evaluated by the perinatalogist. None of that was really any surprise to me. At 20 weeks gestation, we learned that Dylan had a heart condition known as Hypoplastic Right Heart Syndrome. Because of this existing condition, I was prepared for the fact that he would be taken away almost immediately. Meanwhile, I'm getting stitched up and rolled out to recovery. We had to wait about an hour in recovery for my blood pressure to stabilize (surprise-surprise) before they wheeled me back up to my room.
Justin ran back and forth between the recovery room and the waiting room, where a handful of our family and friends were eagerly awaiting the news. When we were finally back in the room, our guests all came in to visit and see how mommy was doing. Dylan was already in the NICU at this point. After about another hour, the perinatalogist came into the room to tell us her findings. Everyone left the room, and she informed Justin and I what they could tell from their initial screenings. She told us Dylan was VACTERYL and explained the condition to us. First, she told us Dylan had an extra vertebrae (V). A cardiologist came and confirmed the congenital heart condition, HRHS (C). Finally, and what ended up being the most serious of all his conditions, his renal (kidney) function was questionable (R). They still weren't sure if he had 2 kidneys and whether or not they were functioning. Further screenings would need to take place when Dylan got transferred to Children's Healthcare of Atlanta.
Once our family and friends left the hospital, I spent the rest of the night in my room attempting to sleep off the pain. And Justin spent every chance he could excitedly walking over to the NICU to visit Dylan.
Thursday
Still no word on the transfer to CHOA/Egleston. They were waiting for spots to open up before they would take him over there. And because, all in all, Dylan was stable, he kept getting pushed back for newborns who needed the transfer more urgently than he did. When I woke up that morning, I was bound and determined to go to the NICU to see my son. Justin couldn't have all the fun without me. It was a chore just to sit up, but I finally made it over there. Justin wheeled me through the hospital, and he seemed to know the route like the back of his hand from his numberous trips to see Dylan. He was so amazing to look at. I just sat in my wheelchair and stared at him in fascination. Justin and I had created this life, the most handsome boy in the whole wide world (he takes after his daddy).
Friday
By early evening on Friday, the transport was finally ready to take Dylan to CHOA/Egleston. Justin and I just happened to be in the NICU visiting him and anxiously watched as they packed our son up in a traveling incubator. At this point, my doctor had not released me from the hospital yet, so Justin rode with Dylan in the ambulance. Honestly, the thought had not yet crossed my mind that I should be alarmed for any reason. I knew he was going to be in good hands at Egleston. Justin sent me text updates the whole time he was there.
At Egleston, there was a whole team of people eagerly waiting to meet Dylan. Justin told me, "He's the most popular kid on the block already." It took hours for all the doctors to run their various tests. Justin went to spend some quiet time with Dylan, and when the doctors returned, they dropped the bombshell on him. After an in-depth ultrasound, they discovered that Dylan only had one kidney, and they were almost certain it was not functioning. They drew some blood and said they would run some tests on it. By the morning, they would be able to give us a definitive answer based on the creatinine levels. Justin stayed with Dylan for another hour. He was so torn between not wanting to leave his son and having me in the hospital with no idea of the extremity of the situation.
When he text me that he was on his way back, my gut had already told me that something was not quite right. As he relayed his day's ordeal with me, we both just cried. Friday night was the first time I'd really thought about the urgency of what Dylan was facing.
Saturday
If the creatinine levels confirmed that his kidney was not funtioning, our options would be very limited. When Justin woke up on Saturday morning, all he could think about was getting back to Egleston to be with Dylan. He was in Dylan's room for 5 minutes before the perinatalogist and surgeon came down to explain the blood results. What they'd found was the worst-case scenario. Dylan's creatinine levels were 5x higher than a normal kidney would allow, indicating kidney failure. The creatinine level would eventually cause the rest of his vital organs to shut down.
The options were minimal. He was too young for a transplant because the anti-rejection drugs would be toxic. Internal or external dialysis was not feasible because of his heart condition. We were basically left with a very sick baby and no viable choices.
Justin rushed back to Northside to have me released, so that we could be together as a family. We had to track down my doctor as he was doing his rounds and explain the urgency of the situation to him. I just sat in the hospital room and waited, stared out the window and waited. Once the nurses knew what was going on, they were all very accommodating. They found a wheelchair and took me through the back hallways of the hospital. Justin pulled the car around, where the rest of the mothers were loading up their babies to take them home. I sat in my wheelchair, no baby, and with the full knowledge of the battle Dylan was facing at Egleston.
When we got to Egleston, I just took Dylan into my arms and cried. We were trying to be as rational as we possibly could with the situation, and Justin's first thought was to call our Priest so that he could come to the hospital and baptize Dylan. We had no idea at this point how much time he had, so our sense of urgency was high.
Our Priest got to the hospital a few hours later and performed the baptism for us. Again, I just held Dylan in my arms the whole time and cried.
After a few more hours, they told us they would move us into one of the step-down rooms in the NICU, where babies recover from surgery. That way, we could have our own private room and bathroom. A social worker came to visit us in the room and asked if we needed anything. She also suggested that we contact the Now I Lay Me Down to Sleep (NILMDTS) foundation, an organization of volunteer photographers that came out to hospitals and took pictures of terminally-ill or recently passed infants and their families for free. She even went ahead and coordinated some time for a photographer to come visit.
Sunday (Father's Day)
Our NILMDTS photographer took time away from spending Father's Day with his own family so that he could take pictures for us. He was an absolutely amazing person and photographer. He came into the room and just immediately started snapping shots with Dylan. Dylan was sleeping, until the flash they'd brought kept going off. He woke up, very reactive, and wanting to follow the flash everytime it went off, that shutterbug (just like mom and dad)! We were able to have his tubes removed for the pictures. The hospital also had a beautiful garden area, where we had the opportunity to take some really great outside shots.
The whole time we were at Egleston, we did not want any visitors. It was too hard to see family or friends at this point. By Sunday night, though, we sent a text out to our immediate family. We invited them to say their last goodbyes to Dylan, if they desired to do so. Justin and I escaped to the chapel to be alone and pray while they all visited.
Monday
Our time at the hospital was spent dealing with a real roller coaster of emotions. We rejoiced in the time we got to spend with Dylan. We were angry over what he was having to go through. We were scared of what was going to happen from here. We were sad that we would have to say goodbye soon. We took turns holding him the whole time, basically only putting him down when a nurse came in to check his vitals.
I wrote this on Monday, our last full day with Dylan:
Dylan is 5 days old today. Our little man is such a soldier. He's been so strong and undergone so much pain in his short lifetime. It's hard to see him suffer. Justin and I decided to start him on morphine last night. He was more fussy than usual, and even though we knew the pain medication would knock him out, we just wanted to take all his suffering away.
We spend our days and nights sleeping in shifts, forcing ourselves to eat when our bodies beg for the nourishment, and holding Dylan (our most precious time of all). We talk to him, sing to him, read, everything we can to let him know Mommy and Daddy are around. Even the silent moments with him in our arms is dear.
Now, the hardest part is knowing exactly what's going to happen, but having no clue in the world what to expect or what it will be like. We had a momentary scare this morning when the alarm sounded that his breathing was slowed and his heart rate had decelerated. I remember Justin saying, "That's what it's going to be like", but there is still no preparing for it.
We got him more morphine, and he's been sleeping soundly since. Never before in my life did I experience such a roller coaster of emotions. There's that overwhelming and instantaneous joy that I felt on Wednesday, when Dylan finally decided to grace this world and then there's that ultimate devastation from knowing that his days with us would be so limited. Never before could I know what the meaning of "being on borrowed time" really meant until now.
And in between the joy and devastation, there's a whole spectrum of other emotions that mostly just leave us drained and numb to the world until we force ourselves to sleep it off for a few hours. As a Mother, I just want to harbor both Dylan's and Justin's pain and worries from them. I want to take Dylan in my arms and lull him away from all this. It breaks my heart to know that this is the only life he'll ever know.
I hold such anger towards God for putting us through this. There are moments when I'm all cried out though, and I just have to smile at Dylan and feel blessed to have had him at all. I have to think to myself that God is calling our little angelic son Home.
I worry also that, after everything is said and done, Justin and I will have a difficult time trying to find any sort of happiness or beauty in life. After this whole ordeal, how can our hearts ever heal and not feel cold and callus towards the rest of the world? How long before we're able to face our family and friends?
How long before I'll want to hear about another person's baby without holding any sort of jealousy or resentment towards them?
I guess only time will tell with all of these things. Maybe Justin and I were put through all of this because we're the only ones truly stong and brave enough to survive such a tragic loss. God would not burden us with more than we can handle, right?
Tuesday, June 17, 2008
We were getting minimal sleep in the hospital. Justin wanted one of us to be awake when the time came, so we took turns holding Dylan. His heart and breathing function had already failed several times throughout the night, but it was as if his body just kept jumpstarting. Our eyes were glued to the monitor, thinking that would give us a definitive answer on when he'd pass. But at this point, our bodies were exhausted. We both needed sleep and food.
Justin wheeled the pull-out chair that we'd been sleeping in closer to Dylan's monitors. The three of us stuffed ourselves into the chair and fell asleep as a family. I had Dylan on my chest, and we just dozed off. I'm not sure how much time passed before a nurse came in to check on us. I woke up as she was leaving the room. I looked over at the monitor, and Dylan's breathing had slowed. I didn't want to wake Justin up because I thought it could've been another one of the dips in his vitals that we'd endured all night. But it felt different this time. I watched the breathing monitor flatline for a good three minutes before I woke Justin up and told him.
It will always be significant to me that he passed away on my chest, where he could hear my heartbeat, the sound he'd gotten so used to for 9 months. Even now, though I can't hold him physically, he remains close to my heart. It goes without saying that I miss my son dearly, but some days are better than others. Dylan took a little piece of me with him and left my heart incomplete, but I am so very blessed and honored to be his mom.
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