{Often the moments that cause us to appreciate life and treasure our loved ones most fiercely
are the ones when we feel like everything is being taken away}
Our son, Aiden James, was born on August 22nd, 2009, a healthy and happy little boy. Well, actually little had nothing to do with it. He was a whopping 10 pounds, 6 ounces.
We took him home the next day, thrilled with our new addition and enjoying the fact that we were now a family of 4!
Just 2 short weeks later, during what we anticipated to be a routine doctor’s visit…”yeah, it’s a little gas, he’ll get over it”…he was rushed to the ER with an abnormally high heart rate.
His little heart was racing at speeds of up to 285 beats per minute, and had been for a few days. He was in rough shape.
He spent the following 5 days in the Pediatric Intensive Care Unit, and while I stayed across the street at the Ronald McDonald House, I found tremendous help in pouring out my heart…my questions, our fears, his victories…in an online journal.
Our son was diagnosed with SVT {Supraventricular Tachycardia}, an arrhythmia of the heart where the heart rate is sped up by an abnormal electrical impulse starting in the atria.
He was on beta-blockers {anti-arrhythmia medication} several times a day, every day, until he was 15 months old. He has been officially med-free since January 1st, 2011!
So…grab a cup of coffee, find a comfortable spot, and journey with us through some of our darkest days…
Friday, September 4th ~ 13 days old
Our delightful little lad has been incredible these past two weeks, eating well, sleeping well, and as happy as a clam! But then something changed. We first noticed his fussiness on Wednesday morning (just 2 days ago). I recall telling my sister, Rebecca, that I was bummed that we had dear friends coming to visit that day – excited to meet our little man – and that that day was the first time I’d ever seen him ‘cranky’. When his fussiness continued, affecting both his eating (nursing less and less, which for our little nursing champ, was clearly unusual) and his sleeping (suddenly more lethargic during the day and suddenly awake more at night, seemingly with gas pain), we knew something was up. And when I say ‘up’, I simply mean mildly wrong…gassy…something I was eating/drinking was irritating him, etc. A bowel obstruction or UTI at worst. Joe noticed on Thursday that his color wasn’t what it had been (he looked considerably paler), and with my dad having frequently commented on how delightfully pink and healthy he looked, this was definitely odd.
I recall Joe and I sitting in the living room on Thursday night discussing whether we should call the doctor or not. Being second-time parents, we were determined to not be as neurotic and paranoid as we had been with our first. I had started changing my diet (cutting out milk, gas-producing veggies, etc.) to no avail. It didn’t hurt to at least check in. We decided we would call in the morning if he was still not nursing well and still appeared to be in pain (with what we assumed was bad gas – although the simethicone drops we had purchased didn’t seem to be helping). Joe and I had both commented at different times, while holding him closely, that his heart seemed to be beating awfully fast. While we knew babies heart-rates were faster than adults, it seemed to almost vibrate. But I didn’t give it a second thought. After all, there are no heart issues on either side of our families, and he’d been perfectly health in utero and at birth.
I was up almost all night with our sweet boy on Thursday night. He was clearly unhappy and uncomfortable, inconsolable at times, and he simply refused to nurse (grunting and pushing away from the breast). I eventually got him to nurse partially at 1am. When 8am rolled around and he hadn’t nursed again (despite my desperate attempts), we called the doctor. While our pediatrician had no opening that day, one of the other docs was available and being our last opportunity to get in before the long weekend, we took it.
Praise God we did.
Assuming we would be in and out, a pretty standard appointment where we would be further enlightened to what a nursing mother should not be ingesting while nursing, we took our sweet 2 year old with us. Within 20 minutes of meeting with the doctor and him not noticing much unusual about him physically or visually, he checked his heart rate. Again and again. It was as though the climate in the room changed. He told us that his heart rate was well over 200 beats per minute. A normal heart rate for an infant is between 100 and 140. Most of the next 8 hours are a blur to Joe and I. An escort to the ER was immediately arranged for us. I’ll never forgot walking across the skywalk from the professional building to the hospital…Joe carrying Ali, Aiden’s carseat and the diaper bag, me carrying little Aiden, still in only his diaper, all bundled up in his blanket. I was foggy and terrified, having no clue as to what was happening within my little one’s chest, and yet finding myself tearfully giving him over to God. My quiet conversation went something like this…“Father, I hold him with open arms. He’s yours. Please don’t take him from us. Please don’t…take him…from us. But, if you choose to, we will mourn and we will ache and we will be angry…but we will still choose to praise you. You are good.” While I have no idea where that came from, it was simply the beginning of His strength rising up within us for the long stretch ahead.
Upon arrival in the Pediatric ER, 4 nurses, EMTs and techs were waiting for us. Our stomachs were churning. I thought I might throw up right there, but the need to be strong and brave for Ali’s sake kept a plastic, reassuring smile on our faces. Between our feeble attempts to distract her with the beautiful surroundings of the kid’s room and keep her away from the beeping machines and needles that were being hurriedly inserted into her precious baby brother, Joe and I kept catching each other’s eyes…the sight of absolute fear in the one causing the tears to pour in the other. We were a mess.
The timing of this all blew us away. For the past two months we have lived in a household of 7. But this particular weekend was different. My mom and dad were in Florida for a much anticipated family wedding, Ruthie had recently returned to college, and Rebecca had plans to be out of town for most of the weekend. We were stripped bare, feeling even more isolated by the fact that my phone and purse had been left in my car – after all, we were only going to be gone for 45 minutes, right? – and Joe had just lost his phone days before and had yet to enter phone numbers into his new one. We had virtually no one to reach out to in our most terrifying moment. No one, that is, but the only One who truly matters. We were forced to cling to our Heavenly Papa…for strength, for comfort, for wisdom, for our son’s life.
We were able to contact my dad in Florida who called Rebecca and had her call us. She sweetly, and quickly, swept in to remove Ali from the chaos.
Within 15 minutes of getting into the ER, we were escorted by 6 nurses/techs/doctors to the Pediatric Intensive Care Unit. His little body looked so tiny on the enormous, fast-moving gurney. With Joe and I struggling to keep up with the team, we tried desperately to hold it together. The next several hours were spent looking through the cold glass at our precious baby getting intubated, put on a breathing machine, having needle after needle inserted into different parts of his innocent, beautiful little body. I wanted to scream and yet didn’t have a voice. I don’t know if I have ever been as terrified as I was that day. Terrified that if I walked away, it may be the last time I would have laid eyes on my baby boy alive. We still had no idea what was happening, only that team after team after team was called into the room. At one point, there were 9 people in the room…3 doctors, along with nurses and emergency workers, the ultrasound guy, an x-ray gal, the respiratory lady, and a crash cart. In a desperate attempt to get his heart rate down, which had hit a deadly 284 beats per minute, they tried dose after dose of medication. They tried ice on his head. When nothing worked, they used cardioversion. He was first shocked with 2 joules. No real change. When they shocked him the second time, with 3 joules, he went into ventricular fibrillation. If this arrhythmia continues for more than a few seconds, blood circulation will cease and sudden cardiac death occurs. Joe had ushered me away, knowing that seeing our 2 week old son shocked would crush my heart. Only he got to see the tension in the room when the head doctor had applied chest compressions and CPR. They had to shock him a 3rd time, this time with 6 joules, and his heart leapt into motion, returning to a high-normal rhythm. Thank you, Jesus.
With a line/tube in virtually every orifice of his fragile body, they continued to stabilize his heart so they could get to the root of this situation. It turns out he was experiencing his first bout of Supraventricular Tachycardia (SVT). His little heart had basically been running a marathon, beating at a crazy 250+ beats per minute for the past few days (what we had first noticed on Wednesday) and had practically beat itself to death. Had we not made it to the doctor’s office that morning, he most likely would not have made it through the weekend. His little heart would have eventually just stopped.
But, God obviously has big plans for this little fighter. Aiden, by the way, means FIERY ONE! And our precious boy clearly has a trail to blaze and a legacy to leave!
In the same way a strenuous workout produces lactic acid in our bodies, the continual contraction of his heart muscle for 2-3 days had produced a toxic level of lactic acid in his body, called Lactic Acidosis. After several hours, while his heart rate was being monitored and ‘manipulated’ by medication when needed, his acid levels still labeled him as in ‘critical condition’. Dose after dose of bicarb (to level out the Ph) had only brought his levels from 14 to 11.
Joe and I have never cried as much as we did this day. We almost lost our Aiden James, just 2 weeks old…and as healthy as they come. Except for what we now had come to know as SVT. Attempting to function on a good day with 1 hour of sleep is tough…today was dreadful. With swollen eyes, pounding heads and heavy hearts we checked into the Ronald McDonald (RM) house across the road. Having roamed the hospital halls many a time while Joe worked here (for 3 years), we knew all about the PICU and RM House…but never dreamed we would spend heart-wrenching days there ourselves.
I have to mention that by now the word had spread, thanks largely to our Facebook status, and by that first night we had well over 100 people praying on 3 different continents. Now that’s what I call a beautiful support network! God was so sweet and faithful in those broken first hours, while our hearts were crushed and waiting on news, we were being soaked in faithful prayer, and our little boy was being lifted up in anticipation of a miracle. We have been unbelievably blessed by the encouragement, prayer and support we have received through our friends and family – near and far, far away – on facebook.
I don’t know if I’ve ever missed my parents as much as I did that first day. My heart physically hurt to not have them near me. I desperately wanted to have them hold us and tell us it would all be okay. Just another opportunity to press into our Papa, and trust him to hold our hearts and comfort our weary souls.
Aiden is on so much medication it turns my brain to mush, I can’t keep up with it all. I pray for no repercussions or side-effects down the line. For now, I’m thankful they’re saving his life. Along with medications, he is on a sedative and a paralytic to help keep him still so he won’t fight the many tubes connected to his little body. We continue to pray for complete healing, and peace and comfort to surround him while we are unable to do that for him. While we know prayer is powerful and are already seeing prayers answered, we feel helpless as his parents. And yet, we know we have authority, as his parents, to stand on God’s promises and speak life over him.
While we’ve broken down numerous times and just wept in each other’s arms, we have so felt the Father’s grace carrying us through this tumultuous time. Just when you think you’ve been through enough…’losing’ my husband to a grueling 19 week Police academy and another 15 weeks of field training, and then losing that long-awaited, hard-earned dream job, ‘losing’ a home of our own, losing insurance (but thankfully reclaiming it at the last minute…of course!), almost losing my own life to an unexpected hematoma hemorrhaging after delivery…now, we had almost lost our son.
Apparently God thinks we can handle a lot more than we think we can. I think He over-estimates us sometimes…but He does know best, yes?
We decide to have Joe return home each night to be with Ali, in an attempt to keep life as normal as we possible for her, while I stay here at the RM house. I chose a room where, from the window – where I now sit and type – I can see Aiden’s room. Right now he is peacefully sleeping. Thank you, Jesus.
It was agonizing to leave his side tonight. I feel so guilty to not be sleeping beside his hospital crib, but urged by his cardiologist to first take care of myself (especially having just given birth and had surgery a mere two weeks before) or I will be worthless to him when he does need me the most, I took his advice and will sleep alone – but sweetly at peace, resting in the knowledge that he’s in the best place possible, the palm of his Papa’s mighty hand.
Saturday, September 5th – 2 weeks old
When we arrived back at the hospital on Saturday morning, we were delighted to discover that his acid levels had dropped from a ridiculously high 11 to a more normal 2.4. While we had overheard that his heart was “toast” the day before (barely contracting strongly enough to pump blood effectively through his body), we were now informed that his precious little heart had improved from a 12% functioning capacity to a miraculous 59%. This is considered low-normal, and left the doctors astonishingly pleased. Yay God!
While he had several episodes of SVT during the night, he was able to self-convert at least once, and they were all short lived.
More prayer. More progress. more tears and occasional fear. Much more faith today!
His birth announcement is taped to the foot of his crib – a constant reminder of his sweet, healthy body sans the tubs, tape, pads and swelling. We cling to this picture of him.
You should know that we have the most incredible doctor in the state of Michigan (he has won many awards and is well known and respected in his field), the most fantastic cardiologist (whom we will be seeing a lot of over the next few years, with weekly meeting and monitoring, as Aiden will be on heart medication for at least the first year of his life), and the most delightfully caring, tender-hearted nurses alive. They celebrate every little ounce of progress with us, and stand eagerly at his bed-side (even when they don’t have to) to see whether he will convert on his own out of one of his many episodes of SVT. Again, God’s sweetness to us amidst the storm. Another beautiful blessing has been the security department. With Joe having worked at Sparrow for 3 years as an Officer, the outpouring of love and support from his old coworkers has been such a blessing – going as far as to hook us up with a special parking pass to get into the hospital’s upper ramp and save us time (and steps).
I met another woman at the RM house who’s baby is 16 weeks premature. She has yet to hold her 1 pound, 4 ounce baby boy. How blessed we are that we got to enjoy our baby at home for a full two weeks before having to hand him back to the hospital staff. It’s all about perspective. I had a sweet opportunity to encourage her and be the ‘lifter of her chin’ that so many others have been to me. Feels great!
Sunday, September 6th – 15 days old
Yet another wonderful nurse. We hear they argue over who gets us. We like this, of course! Such sweet care is taken in tending to our little lamb…special blankets that say “I <3 mommy and daddy” slipped on before we arrive…cute outfits picked out for him, with matching socks. More celebrating around his crib when every bout of SVT is conquered by self-conversion. We adore the precious ladies and amazing doctors we’ve been blessed with.
His breathing and feeding tubes, along with his catheter, were removed this morning. Oh, how I’ve missed that sweet face. While it’s swollen and puffy…it’s his, and it’s beautiful. There’s a chance I will get to hold him and nurse tonight. In the mean time we stoop over the crib side and kiss with plump cheeks and dry lips. I’m pumping and storing milk for the babe.
Alathea is delighted to get to see her baby brother today (we thought it wise to wait until he was free of the ‘scary’ tubes in his mouth). He is nicely swaddled so she doesn’t even see the three tubes that precariously emerge from his diaper. Phew. She learns that Aiden has a special heart and that we get to help take care of him. Our lovely nurse gives her a stethoscope of her own, along with chest ‘stickers’ and a pen-light. She is delighted! Oh, and the chocolate milk make her the happiest kid on the block.
After dinner we head home. Joe and Ali for the night, me for a restock on clothes and other vitals. The past few days have been hard on this still recovering body and my bleeding and pain has increased, so my sweet husband has been taking incredible care of me (to an annoying degree at times, with ‘forced’ nap times). Oh, how I adore this man.
While driving back to the hospital – excited, and nervous, to hold my little babe in my arms and feel his skin against mine, to nurse him, for the first time since Friday – I listen to a song I’ve always loved, but now holds new meaning for me (In My Arms, by Plumb).
The chorus completely breaks me.
“Knowing clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down, waves will crash around
But you will be safe in my arms.
Castles they might crumble
Dreams may not come true
But you are never all alone
Because I will always, always love you”
What a precious moment, when the nurse placed him in my arms. He smelled so sweet! While he latched on well, he was still so groggy from coming off the sedatives and paralytic that he can barely stay on. Burping him is awkward and scary as he has so many lines coming out of his groin area that trying not to tangle and tug is exhausting. We decide that it would be wise to bottle feed overnight (helpful in knowing quantity) and pick-up nursing in the morning once his central and arterial lines have been removed. I can’t wait!
My mom and dad arrive back tomorrow (Monday) and I cannot wait to hold them close. Joe and Ali will be picking them up from the airport tomorrow afternoon, they will be coming straight to the hospital. It has been agonizing for them to be away during this time.
We are anticipating being able to bring him home later this week, but will not know for sure until the doctors are confident his little heart can handle the SVTs on it’s own, without the close supervision of the PICU staff. We will wait and see, confident that he remains in the best hands possible.
Monday, September 7th (Labor Day) – 16 days old
It’s a new day! Our little warrior had 6 bouts of SVT last night over a 12 hour period, one of them lasting 3 minutes. An ice-pack on his face/head quickly brought his heart rate back down. The other five were all self-converted and much shorter. Considering he’s off most of the drips and more critical medications, this is not bad at all.
We have our wonderful nurse Kellye back today. I continue to be amazed at the incredible care we have received from the PICU nurses and doctors. The tender touch and sweet support they envelop our son with melts my heart. They cheer him on with every little step towards health he takes, delighted at the opportunity to snuggle with him over a warm bottle. We call them Aiden’s ‘other mothers’ J
On a broader spectrum, we’re been blown away by the incredible support and love we’ve received from our friends and family…from picking up one of my ‘happy’ foods (yay Hippie Hash!) for us to indulge in, and taking cookies to the house for Ali, to visiting the hospital…finding they missed us…and then driving 25 minutes to our home just to love on us. Not to mention the amazing messages and posts we are constantly receiving on facebook from friends and family in many different states and countries. Just to know we’re this surrounded by prayer knocks my socks off. This incredible expression of love overwhelms me! Thank you.
Aiden is looking gorgeous and healthy today…plump and pink! Daddy holds him first thing this morning seeing I already got to love on him last night after Joe had left with big sister.
His stats are all good and finally his potassium is closer to where it should be. His arterial line was taken out this morning – this thrills me as its one less line to tangle while attempting to hold him, kiss and cuddle him, and nurse him. Speaking of which, I try again to nurse but the meds (and no doubt the escape sleep offers after the trauma he’s experienced over the past few days) wins yet again. Back to the bottle, which he takes without batting an eyelid.
Joe and Ali are picking up my parents from the Detroit airport this afternoon – upon their arrival at the hospital, long hugs and tearful kisses are sweeter than ever. It’s been a long weekend for all of us. Once settled, they simply hold Aiden and look tenderly at him, as if seeing him for the very first time again. Ali, of course, is delighted to get to see her baby brother again and tenderly strokes and kisses him as much as she’s able. More chocolate milk. She’s a happy girl. Trips to the hospital may start taking precedence over trips to the park soon. Odd, but for the love of chocolate milk, understandable.
~
