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Ace "A master of something" Synonyms: wunderkind, maven, wiz, winner, marvelous, superlative, formidable Gamaliel "God is my reward/recompense"
(indicating the loss of one or more earlier children in the family)
It's about 5 AM on September 28, 2019. I had just nearly fallen off the edge of the bed from a routine doze off as I nursed Ace. I was beyond exhaustion and quite emotional from previous life events. As I got myself together and laid Ace back in his bassinet, I attempted to reach my next round of slumber. But I couldn't. Something was off. Several minutes had passed since I laid him down and Ace was unusually restless. For a bit, I just assumed he would settle himself back to sleep, so I waited. But that never happened. As I went to pick him up to cuddle him back to sleep, his little 3-month old body was unexplainably limp. I look closer and see a hue of blue around his lips and hear a growling noise you never want to hear come from a baby. My heart dipped to my feet. I was stuck from confusion but in fight or flight enough to yell to my husband, "Ace isn't breathing... dial 999!" The growling continued but was now accompanied by a soft moan. I remained stuck and unsure of what to do but cry and attempt to wake him by calling his name. All previous training of CPR had been wiped from my brain as Ace continued to fade further away. Meanwhile, David had sprung out of bed and yelled for me to give Ace breathes while he phoned for help. David was soon receiving instructions from the emergency operator on the other end of the line. I could vaguely hear him as he shouted to me, "put him on the floor... keep giving him breaths!" Trembling and crying, I cautiously lay Ace on the floor and immediately touch my lips to his to supply his little body with oxygen. I continued to give Ace rescue breaths, while simultaneously feeling every emotion in my body until the paramedics arrived about six minutes later. Soon, the complete strangers had my baby's life in their hands. While shakily answering their questions as they attached the defibrillator pads to Ace's body, all I could do was pace the floor as I prayed, and send out mass text messages to every prayer warrior I could think of. I was afraid to watch the paramedics work out of fear that unpleasant images of my baby's lifeless body would haunt me for the rest of my being. I can remember, listening to the happenings in the background while looking out our bedroom window as I told God off.
"Lord, why?!"
"Is this really happening?!"
"You can't take my baby from me!"
"What did I do wrong?!"
But for some reason, in the midst of the chaos, texting, praying, emotions, tears, pacing, and uncertainty, way deep in my spirit, there was a whisper. A whisper that I couldn't ignore- it was reassuring and comforting- telling me that everything was going to be alright. At times I ignored it as I felt that at this very moment I was supposed to be crying and screaming, but instead, there were brief (and I do mean brief) moments of calm.
By now, 30 minutes or more have passed and our upstairs hallway was filled with about seven NHS professionals dressed in green and their array of medical gear. David was tossing clothes and other bits across the hall as we prepared to head to our local hospital, Watford General. Ace had been revived enough to be intubated. Things now began to move quickly as we swiftly trickled out of the house. The sights outside our home were like a scene from a movie as five emergency vehicles lined our residential road. It was all too surreal. What was going to happen now? Was my precious Ace in the clear? Was that whisper a figment of my imagination? Would I get to hold my Bubs again? What was going on in his little body to cause this to happen?
The above story is just a small fraction of a bigger, ongoing story and very much a reason why I have been quite emotional over the last week or so. You see, after leaving our home on Green Lane that day, Ace didn't see home again for another four months. Just in that day alone, my Acey experienced four cardiac arrests (one of which left him without oxygen for more than 15 minutes) and a few "fits" (seizures), which resulted in three closely monitored hospital/ambulance transfers. His little arms and legs had to be drilled several times with an interosseous gun as the doctors at our local hospital attempted to gain access to administer resuscitation medication. All the while, his body continued to look lifeless, especially when he was placed in the ambulance transport pod. Seeing Ace in the pod was too much like seeing my baby in a coffin- it was all very hard to see. It was the worse day of my life, and David and I witnessed it all. We were told several times that day that "it wasn't looking good". That Ace was "very, very sick" and that "they were doing everything they could". But again, as odd as it was, that whisper was still very much present. As hard as it was to witness all of this uncertainty, while I helplessly watched my baby suffer, I still had moments of calm. Those classic, movie-like phrases that spewed from the doctors' mouths literally went through one ear and out the other- at least at that moment. And David and I were the perfect team as we made sure we encouraged each other. It wasn't until after about 4 hours at Watford General, an unforgettable ambulance ride managed by actual doctors, and an hour or two of watching and waiting at hospital #2 (St. Mary's Hospital), that we learned of what could possibly be the problem. The staff at St. Mary's were careful in their efforts of sharing medical opinions and that was just as challenging as the "it's not looking good" talks we had heard earlier. Nonetheless, David and I strived to remain hopeful as we still had our Acey, despite all the wires, tubes, tape, pumps, medicines, and a large breathing machine that was keeping him alive. We were essentially told that Ace's heart appeared to have some thickening on the left side that was compromising the blood flow. "I'm no pediatric cardiology specialist," said the young doctor candidly, "so I contacted doctors at Royal Brompton Hospital to share Ace's images and I'm just waiting to hear back." More waiting? Royal Brompton who?! Thickening of his heart?! What did all this mean?! By now, exhaustion was beyond a thing for us and my breastfeeding boobs looked and felt as though a gallon of warm ice had been surgically injected into them. The nurse provided me with a breast pump and storage bottles as I wondered if I'd even have the opportunity to feed the milk to my Bubs. At this point, everything, and I mean everything, was up in the air. After a while, we were encouraged to get some rest at the accommodations offered by the hospital and was promised a call as soon as they heard from the doctors at this other hospital, Royal Brompton. Unable to resist the opportunity and acknowledging that there was literally nothing else we could do, David and wearily headed to the hotel to regroup. It was maybe an hour and a half after settling down that we received that call. We quickly gathered our random belongings and headed back to St. Mary's Hospital where we immediately learned that Ace was being prepped for yet another transfer- to the world-renowned Royal Brompton Hospital. We were reassured that this was the best place for Ace to be and the best place for him to be in hopes that his odds for surviving were greater. After surviving yet another transfer, Ace safely arrived at hospital #3 - The Royal Brompton Hospital in Chelsea, London- at around 1130PM, approximately 17 hours after it had all began. It wasn't until arriving at Royal Brompton that those random feelings of calm began to change to feelings of hope. We were being told that Ace was in the hands of the best and that was a long cry from hearing, "it's not looking good". Those words never came from the mouths of the doctors and nurses at Royal Brompton. Instead, we were finally given some answers. The verdict… Hypertrophic Cardiomyopathy (HCM). This diagnosis was a complete shock and absolutely foreign to me, despite my professional background. And the consultants at Royal Brompton were also taken back by Ace’s presentation and diagnosis as they had never seen HCM of this nature in such a young baby. This new information immediately left me with questions. Was this something that the pediatrician missed at his newborn check? What was his prognosis? Was this going to take my baby from me? How was this even his reality?! Despite the questions, we were finally given some reasonable reassurance. And honestly, we were finally feeling as though our Acey was truly going to be alright- and you know what, that feeling proved to be real.
Now please don't misunderstand me. The 4 months we spent at Royal Brompton Hospital played a huge part in this ongoing rollercoaster. We had a doctor tell us to be prepared for Ace to have disabilities. We had a few disagreements with a couple of nurses. And I subsequently fell ill from all the stress (I’ll have to tell you about that some other time). But they, the doctors and nurses at Royal Brompton Hospital saved my baby! I absolutely do not dismiss all the hard work, expertise, and special care that was provided by the emergency responders, transport doctors, the A&E team at Watford General, or the doctors and nurses at St. Mary's. But… I have to make this clear again, Royal Brompton saved my baby (by the hands and guidance of The Heavenly Father, of course!)! Yes, Ace ended up in the ICU for weeks, experienced yet another cardiac arrest (while being prepped for a medical procedure), in addition to another seizure, cranial blood clot, a subsequent brain bleed, a few NG tube replacements, the flu, and the classic hospital contracted RSV, but my little superhero is still here, a year later, defeating the odds! And for that, I am over the moon grateful!
I can't speak enough praises of how blessed and happy I am to be the mother of THE COOLEST LITTLE SUPERHERO ever (pardon my bias!), but I'm sure I've cried more in this last year than I have in my entire adult life. There are still days where I’m consumed with worry (“Is he breathing?!”), anger (“Ahhhhh, why?!”), sadness (“Ace, mommy’s sorry, I wish I could take it all away.”), and jealousy (“That’s not fair, so-and-so son’s is already walking?!”). There are days I have to steer clear of social media as I see pictures of babies/toddlers, younger than Ace, moving through their developmental milestones, putting them leaps and bounds ahead of him. There are days I just have to go and sit on the loo to have a crying fest simply because I’m feeling weary and helpless. And there are days I’m just outright frustrated with God. Why is my baby 15 months old and still not crawling or walking? Why did my baby have to spend his first Halloween, Christmas, and New Year’s in the hospital? Why did my baby have to take nearly 10 medications throughout his day, at one point? Why does my baby have to sleep with a hospital-grade heart monitor attached to him every night? Why are my baby’s weeks consumed with medical appointments that spread across 5 or so specialists instead of trips to nursery or the park? And why the hell did COVID-19 have to happen, further complicating my Bub’s life?! Ace has yet to have the opportunity to play with a peer. Ace has yet to have the opportunity to go to the zoo. Ace has yet to have the opportunity to play at the beach. And he has yet to have the opportunity to meet all the wonderful people back home that love him. All in all, these scenarios are Ace's reality and every day I work to accept them. Although Ace’s life has been compromised and greatly impacted by his condition and we still don’t know the extent of brain injury from the cardiac arrests, I remain hopeful. One day soon, he will be big enough to have his long-awaited surgery for an Implantable Cardioverter Defibrillator and prayerfully, he will be safe and in the clear.
As always, I am trying to hold on to all the good that has come of this trying situation. I will hold on to the fact that Ace is the BRAVEST little person I know. I will hold on to the fact that Ace brings me JOY on a daily basis. I will hold on to the fact that Ace has an AMAZING team of specialists guiding his care. I will hold on to the fact that Ace is making strides, on his own terms. And I will CHERISH the fact that he very much reminds me of my Momma! I will also acknowledge that since being "released" from Royal Brompton Hospital in January, it has been wonderful being at home, taking care of my little guy, as I get to make up for the "lost" time (because parenting in the hospital is NOT the same as parenting within your own home and routines). I have gained new and/or stronger friendships, my husband and I proved yet again that we can hold each other down when life gets rough and tough, and I have been reminded, yet again, that I am not in control! A near and dear friend of mine reminded me a while back that God ordained Ace for me- the story has already been written- and I will be forever thankful for her for reminding me of this truth. With all this in mind, I'm here to tell you that miracles do happen, children are very much resilient, and again, we have no control over this game of life. So, my heart is full today, and EVERY DAY, knowing that my Acey is alive and reasonably well. His future is BRIGHT and I am without a doubt, the mother of the COOLEST LITTLE SUPERHERO. I will continue to thank God for his saving grace and for saving my Bubs as I continue to enjoy watching him grow and flourish, in his own little special way!
Mommy LOVES you, Acey!!!
A special thank you to all the Acey prayer warriors- loved ones and strangers. You filled our hearts, encouraged our souls, and helped us maintain hope during an unbelievable time. May God bless you real big!
Much love,
