• Alicia Assad on CaringBridge

Resilience...and Henry, my one month old "miracle baby."

The moment William's accident happened, I was already tired and stressed out. Thirty six weeks pregnant and headed out the door with Henry's sonogram in hand that noted the enormous size of his ureters and the beginnings of kidney damage, I was distracted but pulled back to reality as I heard the babysitter scream. With the rising sensation of fear and panic in my chest, I ran back into the kitchen, and saw the babysitter running to the sink with William in her outstretched hands. I grabbed William from her and when I saw the heat and steam rising up off of his clothes, I attempted to rip his shirt off not realizing that his bicycle helmet was still on. I had to fight the adrenaline rush and slow down in order to unbuckle the strap and remove the helmet, then peel off his shirt. In this eternally slow and clumsy moment, the severity of the situation became apparent as the skin had almost completely melted off half of his face, neck, chest and arms. As I tried to grapple with what this meant, I couldn't help but feel as though I was helplessly sinking into a dark hole. Maybe I wanted to sink into that hole and disappear because I knew what I had to do, but didn't want to. I really just wanted to run away from it all.

Not wanting to shift from this moment because I knew the next would be even harder, I looked up, saw Eddie standing nearby and was relieved to be able to give him William. As I handed him off, Eddie and I made eye contact and had an unspoken dialogue that said, "knowing how long it took the ambulance to get here when he had his stitches four weeks ago, we need to just get in the car and get to the hospital," and with that Eddie headed for the car. I turned around with the intention of finding my purse and when I faced the babysitter, I paused but the room continued to spin around me, and suddenly the fear and panic escaped my body as I screamed, "Nooooo! I can't handle this!" and collapsed. The babysitter caught me, picked me up and held me by the shoulders while she shook me and said, "Alicia, listen to me - you need to be strong. You need to get William through this and you can't let yourself go into labor now." With that, something in my perspective shifted and I found my way to a stronger place. I regained my footing, calmly walked out the door and climbed into the car next to William so I could hold the carseat straps away from his raw, oozing skin as Eddie dodged rush hour traffic to the hospital. While I was more scared and helpless than ever before in my life, I stayed focused on what I needed to do and that was comfort my terrified son. I pressed my cheek to the unburned side of his face as he screamed so I could whisper in his ear over and over again, "Mommy loves you so much, I know the ouchies hurt but you are going to be all better soon. You are going to be alright."

I was so collected and focused that when I rushed through the emergency room doors, and said, "my son is burned please help me," a few doctors and nurses looked at me and then carried on with what they were doing. I repeated, "someone please, I need help...my son." No response, they all were in deep conversation and the pregnant woman running with a shirtless, crying two year old in her arms could wait. Before long I was arms length from the check in desk, and pissed off that no one was paying attention to me so I screamed, "I need help now...my son has been burned and I am very pregnant and having contractions and at risk of going into labor at any moment!" Instantaneously, I was swarmed by a group of people and whisked off to a room where I sat on a stretcher with William on my lap and before I blinked they had layered gauze on his burns, put an IV in his foot, hooked up blood pressure, heart monitors, inserted the foley catheter, started morphine and roughly explained to me that the size and location of the burns were cause for grave concern.

Throughout the remainder of the ER experience, the transfer to the burn unit, that first fear filled sleepless night with William followed by a two hour surgery the next day, then six days in the hospital, a week home anticipating the inevitable second surgery and recovery from skin grafts, six more days in the hospital, then adjusting home with a wounded kid who needed daily dressing changes and constant affection, an attention deprived Catherine who was trying to digest Mommy being in a hospital again to have the baby, breaks from it all only to go to my OB to monitor the baby that needed a surgery by three days old and may or may not need to be induced at any time if my fluid dropped, three nights of non-hospital rest followed by my water breaking and a 19 hour labor......

....I was strong. I was resilient. I handled what I needed to. We got through it and each day now, our situation is better...more manageable...and ad nauseum we repeat, "we were so lucky...it could have been so much worse.....thank goodness his face will be ok, twenty years ago he could have died, we are so lucky Henry held out until William's hospital stay was through, we are so lucky Henry didn't need a surgery right away..."

But now as life is continually better and I recognize more blessings in my life each and every day I find that I am struggling harder than ever to stay strong and resilient. Why now? The way I look at it is that resilience is something you need to work hard to maintain. I liken resilience to a muscle: the more you work your muscles, the stronger they become. The more you work at resilience, the stronger it becomes, and as with a muscle, the more consistent you are at this, the easier it is to maintain your strength and tone. These days my resilience should be as bulky as body builder's muscles but still, I cannot help but feel as though my "resilience muscle" is completely overworked and fatigued. As when your bicep muscle is maxed out and burning and quivering and you are fighting your for say, "just one more bicep curl..." I am willing my resilience to "help me keep it together" and "stay positive" but some days, just as some workouts, are easier than others.

I suppose what gets me through these moments of exhaustion and sadness is simply allowing myself to have them. Holding it all in is certainly not healthy and I am discovering that the most useful tidbit of information I took away from my studies of positive psychology involves something called the Losada ratio and Barbara Frederickson's broaden-and-build theory of positive emotions. Broaden-and-build suggests the necessary role of both positive and negative emotions in our lives. We experience these emotions every day and while a negative emotion such as anxiety leads to a survival response (fight or flight), a positive emotion, such as hope, can allow us to see the light at the end of the tunnel and play a long term role in psychological resilience and flourishing. If we are "supposed" to have both positive and negative emotions and the Losada ratio suggests that a healthy balance of these emotions is 3.1 positive to negative then I constantly remind myself that the negative emotions I process are normal, expected and as long as I keep them "in balance" I will be ok...I am moving forward and yes, I am healing so ultimately, I am adding fuel to my resilience tank. At least this is what I tell myself these days...

These days, William's journey continues to take turns that surprise us. Two weeks ago when we took him to burn clinic, we were told that soon after we get his "special shirt" fitted that holds his grafts in place (it should be here next week) we should start considering procedures to help with the scaring of his grafts. These procedures, among them microdermabrasion, laser treatments and Z-plasty are done in the operating room. Hence, William needs to be put under and relive the trauma of being in a hospital and healing from open wounds four or five times, maybe more depending on the severity of the scar tissue. Overwhelmed by this, we went to the city for a second opinion and those doctors suggest we do nothing and accept that he will be badly scarred and his movement might be restricted from the tightening of the scar tissue. We are still researching and gathering opinions, but I think our decision will fall somewhere between allowing time to see how his body heals on its own and being proactive to give him every advantage to heal - even if that means some invasive interventions in the next year because the scar tissue is already beginning to restrict mobility in his neck.

While he detests his "lotion massages" that I do twice daily and itches violently at night to the point where I need to hold his arms while he is sleeping and console him back to sleep when he yells out from the discomfort, William is as goofy, rambunctious and outgoing as he ever was. Diaper changes are tough because he gets raw spots on his still healing behind, but he cries, deals with it and moves on to either ride his bike, hunt down a fun new toy from Catherine's room or "see baby Hengwy." I think his personality and attitude are what help pull me through those moments when I want to feel so sad and angry about what he has and continues to go through. I used to love bath time in my house where I had two "naked monkeys" running around....but now it is the hardest time of the day for me because I need to flex my "resilience muscle" really hard to fight back the tears I want to cry when I see William's beat up little body. I realize this will all look better with each passing day but he will never be perfect...as he was when I brought him into the world. I think Henry in his sweet infant perfection is a reminder of this. We bring our babies into the world and then life happens....and lately I am working on accepting that there is nothing I can do to erase everything that happened.

Henry had a sonogram at two weeks old where it showed his ureters were perfectly normal but given the size they had been while in utero and a thickened bladder wall (which suggests damage) I was told to take him for what is called a VCUG. This test is an X-ray taken after dye is inserted into the urinary tract via a catheter (how I love these...) to essentially see where the urine is going and allows a closer look at the potential areas of dilation. The doctor performing the test didn't give him a UTI (phew), and was able to tell me that indeed the ureters were now perfectly normal and there was no kidney damage or reflux, but still he still had a dilated urethra and thickened bladder wall. But "with a really good urine stream, this is a very confusing and contradictory finding." I left the test assuming that this would mean constant follow up until they figured out what the cause was and had a week of anticipation before the follow up with the pediatric urologist, Dr. Hanna. At our appointment this past Wednesday, Dr. Hanna entered the room and said, "Ok, let's see what this little trouble maker has been up to." He studied the X-ray for a moment and muttered, "he most definitely had a valve and at some point between your last pregnancy sonogram and the one he had after birth, he corrected it." While he stepped back, folded his hands across his chest and continued to stare at the findings, I suggested, "so Henry's technically not a trouble maker." To this, he replied, "no, I still consider him a trouble maker...just a brilliant one." Eddie and I looked at each other, back at him and asked, "how often does this happen?" to which he replied, "I have been doing this for over thirty years and while I have heard of this happening I have never seen it happen myself." "So you mean we have the miracle we have been praying for?" Eddie suggested and as Dr. Hanna was snapping photos of the X-rays to report his "rare finding," he said, "yes, I suppose you could consider this somewhat miraculous."

While we still need to do a procedure in the OR when Henry is six months old to make sure the rest of the dilation dissipates and there is no residual valve left behind to give him "a clean bill of health," we are optimistic that this will be the final chapter of his PUV. Henry's situation was indeed as severe and worrisome as the sonograms I had during pregnancy indicated. Looking back that must have been why I was checking in weekly with Dr. Hanna via his cell phone on the progress of my sonograms. Now, despite all that worry, and I suspect because of all the prayers from so many loving and supportive friends, family and even strangers...I have a thriving baby boy who is exactly one month old today!

So, I think I will end this very long post with the amazing news we received: Henry is a "brilliant troublemaker" who I am now certain is "perfectly healthy" and after his procedure at six months I will not need to spend another moment worrying about his urinary tract or kidneys or handing him over for another test. His situation will be but a small bump in the road. Yes, William's road to recovery continues, but I have been prepared since December to be focused on the health issues of my son at this given moment in time. William might not have been the son I anticipated to be in and out of the hospital and sleeping in my bed but life is full of surprises. It is certainly filled with miracles...big and small....and as long as the good outweighs the bad in any situation in my life, I'll muster up the strength to keep working at my resilience to keep on keeping on....

PS - I am perfectly capable of properly citing the positive psychology terms I referenced above but I am out of time as William is eager to go outside on his bike now that there is a break from the rain. If anyone wants more information about resilience, the Losada ratio or broaden-and-build please let me know!