{A Snapshot}
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.
“For I know the plans I have for you, declares the Lord,
plans to prosper you and not to harm you,
to give you a hope and a future”
Jeremiah 29:11
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, August 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.
With my parents back in town, they take Ali home and leave my precious husband here with me. For the first time in 4 nights I get to have my hubby by my side at night here at the amazing Ronald McDonald House. As I sit here and type, he’s fast asleep beside me – so handsome and sweet and tough and gentle and strong…all at the same time. How I love and appreciate this incredible man. He is the most wonderful friend, husband and father, and the knowledge that he’s mine for the rest of our time here on earth makes me want to proclaim to the world that I’m the luckiest woman alive. And look at that…I just did! J
Our little champ has not had SVT since before 7am this morning, it’s now after midnight! Thank you, Father! The docs still expect he’ll be headed home by Friday, maybe a little earlier if he keeps this up! I told the nurses yesterday that because Aiden was conceived while Joe was enduring State Police Academy…he’s a born fighter! And he’s proving us right more and more each day.
I got to hold him for a straight hour and a half today. He smells absobloominlutely delicious. Kisses all over commence immediately and don’t stop until our temporary farewell this evening. Before the end of the day he nurses twice, just perfectly! We’re back in business.
Seeing we will be administering his medication 2-4 times daily for the next year or so, the doctors think it wise that we start doing it while he’s still in hospital to make sure we feel comfortable with it. I gave him a dose of propranolol (the beta blocker he’ll be on) and he slurped it down with no problem. Dose 1 of 1460 down. It’s a start, right?
We expect his central line with be removed tomorrow, which will further free him from his tubular tethers. Joe’s grandparents will be driving in tomorrow – I’m thankful they will get to see him looking so well.
We continue to be amazed at his beautiful progress and eagerly anticipate more miracles tomorrow.
“You did it: you changed wild lament
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I'm about to burst with song;
I can't keep quiet about you.
God, my God,
I can't thank you enough”
Psalm 30:11 (The Message)
Tuesday, September 8th – 17 days old
Who is this delicious man beside me?!? Aaah, my husband! How lovely to not wake up alone. I have a feeling this is going to be a spectacular day.
Joe runs off to pay our cobra bill (yes, should probably mention that we lose insurance in about 3 weeks! Just another opportunity to see God’s awesome – most often last minute – provision). I head off for a date with my little hero…who is, yet again, a nursing champion. When I unwrapped his swaddle to change his diaper, I was awestruck. While this is hard to explain, and will most likely be lost on anyone but me, his outfit tickled me pink! When we first took Aiden into the doctor on Friday morning, he was wearing one of my favorite onesies…mod little puppies with a little saying, “Dog Gone Cute. When I went home Friday night after our initial heartbreaking day, I pulled his onesie out of my purse and wept, devastated to have brought his clothes home…and not him. So, on this beautiful Tuesday morning, our lovely Kellye just happened to pick out a cute outfit from the PICU arsenal of baby cuteness…and it just so happened to be the identical outfit to what we had brought him in wearing(only for a 9 month old – ha!). Today is going to be a good day, indeed!
Our doc, the head of the Pediatric unit, heads in…smiles, comments on how fabulous he’s looking and declares what I’ve been aching to hear…”well, it looks as though he’s going home today…if you’ll still take him?” And guess what…I’m in!
Joe arrives just in time for a meeting with the doctors and nurses to go over his vital stats, his progress, and the game plan from here. A fabulous cup of coffee for the doc brings a delightful smile to his face – nice work, hubby! Now down to business. His stats look great, everyone is incredibly impressed with his recovery and progress, central line is coming out, renal ultrasound scheduled, medications gone over (he’ll be on 2 meds for the next year: 1 of them, 4 times a day, the other, twice a day). I can’t express how my heart swells when the doc, somewhat stumbling over his words and looking at Aiden’s file, says…”This is really amazing. This is beautiful. You know…sometimes…well…God is just watching out for you. He was really not looking good on Friday. But this, this is just great!”. Amen, brother…I couldn’t have said it better.
On another note, just for kicks and giggles, I must mention my graceful eating of pavement outside the Ronald McDonald house yesterday. While I’m still not positive how exactly I managed to stop, drop and roll, I’m sure I was quite the sight to see. My pride was much more bruised than any part of my mortified body. I was thankful to have not been spotted by anyone (that I could see, at least), got up, found my glasses, took a bow and promptly headed for the house entrance. Yup, it was fabulous.
I get lots of time to sit and hold my little one today as it takes a while to tie up lose ends and wrap everything up. Ultrasound is clear. Central line is out. Chest ‘stickies’ are off. We have a beautifully un-tethered babe. Paperwork is filled out. Things get wrapped up at RM house (what an amazing place!). The first of many appointments with Aiden’s cardiologist is scheduled for Friday morning. I discover, to my dismay, that I must kiss caffeine goodbye. I grieve the chocolate more than the coffee. But it’s a miniscule price to pay for the precious life of my son.
At 6:20pm, we sign the discharge papers and our little warrior is officially, and most honorably, discharged from the Pediatric Intensive Care Unit. What a glorious – and terrifying – moment. I wish I could take the nurses home with us. My initial fear is beginning to subside – my sense that I may never sleep peacefully again out of fear that I might miss an episode of SVT that may claim his little life. I worry that I may get wrapped up in the chaos of parenting a newborn and a 2 year old, not to mention attempting to relocate my design business from the back burner to a slightly hotter setting, and forget to give him a dose of this vital medication. I dread our little Ali getting into his medication, as one drink would kill her. But…I have to remind myself again and again that the incredible calling on this little boy’s life has been made crystal clear to us over these past few days. Why would anything change now.
We arrive home at 6:45pm to the welcome arms (and joyful shrieks) of our two year old! Life is good. She tenderly hugs and kisses her baby brother – with the occasional, less-than-tender poke or squeeze – and whispers in a higher tone than usual…”hi sweet boy, hi sweet boy.” Aaah, Melting!
The midnight dose of his beta blocker has been administered and we’re going to (attempt) to settle into bed. What a crazy 5 days it’s been, and what a crazy 12 months lay ahead. I’m learning, however, that crazy isn’t always bad. The world urges us to strive for tidy, predictable lives. But the truth is, it’s during these uncertain times – the moments when you’re tempted to shrivel up and hibernate until the storm passes – that we learn to bloom where we’ve been planted. After all, it’s the poop (ahem, manure) that makes for the most glorious blooms. This is what we’re learning to strive for…dealing with the poop, and searching for those sweet buds…the ultimate sign of new growth.
Thursday, September 10th – 19 days old
Today was much better. I think that reality began to soak in yesterday, our first full day home from the hospital, and to put it sweetly…it was a hard day. When asked how I was doing, my response was simply, “it depends on the moment”. I never knew I could collapse into a tearful, fearful mode so quickly. At one point, I said to my sweet hubby…so, do you want to ‘check back into’ the hospital? The sense of safety and knowledgeable assistance we’d felt in those first 5 days in the ICU since first discovering the SVT was suddenly gone. Where were our precious nurses, our incredible doctors, and that wonderful ‘call’ button. Gone. I’m sure the fact that I’d actually slept those 4 nights at the RM house – due to complete and utter exhaustion, and the need to allow my body its still-very-needed recovery period - had effected my ability to be resilient while awake. The fact that I got 4 deliciously long, hot showers 4 days in a row was simply a perk (and something I’m positive hasn’t happened in over 2 years!).
I remember feeling a similar sense of helplessness and isolation when we brought our firstborn back from the hospital. With Aiden, we confidently walked out the day after I gave birth – much to the surprise of my doctor – and attempted to get settled into life with 2 wee ones. This return home, after Aiden’s ‘journey’ had started, was very different. I seem to crumble at the drop of a hat. I’m sure most of this is due to lack of sleep, the sense of being overwhelmed as we get used to the new weight of his medication schedule, and just the constant reminder that we almost lost this precious little life just a week ago. I’m trying to be okay with not being strong and having it all together – and being brave enough to admit it. More importantly, I’m learning that when I am weak, He is strong. As Graham Cooke puts it…there are not ‘good’ and ‘bad’ days. Simply days of grace. Sometimes it’s grace to enjoy, other times it’s grace to endure.
I wept when we received a beautiful prayer in the mail, lovingly personalized with the outline of our friend’s hands – a tangible expression of their laying their hands on him in prayer. I melted when a beautiful bouquet of flowers was delivered to our doorstep today with a note that beautifully declared, “Welcome home, baby Aiden! Praying for continued healing in your precious little body”. I’m bowled over every time we check facebook, in the few moments of peace we get, and see the flood of prayers, support and selfless offers to help wherever needed. You may never fully understand how much this touches our hearts. We’re absolutely blown away from the response we’ve received to our little hero’s story. Thank you from the very depths of who we are. Please know that we are so aware of being carried by God’s grace during this time – and your faithful prayer has been a tremendous factor in that. May blessings abound back to you all as you’ve blessed us with your love. And as life settles down, we will do our best to respond to everyone.
Our little Ali is doing better today, a little less fragile, and a wee-bit less whiney. It’s a start. She’s been incredibly affectionate and takes every opportunity to snuggle with us and tuck her head of adorable curls into the nape of our necks. While I hate the idea of her sitting in front of the goggle box watching her often requested ‘Baby TV’, I’m learning to let it go – I think we all need the break it offers and contrary to what I have told myself, it will not cause her to perish. We’ve really been praying for grace and patience with her because it’s been really hard to deal with her antics amidst dealing with her tearful baby brother and his meds. When both kids are crying, and you’re low on sleep, it’s so easy to snap – but we’re constantly reminding ourselves what they’ve been through (while very different, each has suffered in their own way this past week) and how grateful we are that we have 2 beautiful children.
Aiden has been very, um…high maintenance. I hate the term ‘fussy’. Unless he’s nursing or wrapped to me, he’s been crying a lot. This breaks my heart as he was such a contented baby before our world threatened to come crashing down last Friday. It also causes us to break out the stethoscope and check his heart rate often as that’s one of the signs to look for (SVT). I’m thankful for the ability to ‘wear’ him as it allows me at least accomplish some type of laundry movement while lulling him into sweet sleep.
My precious man has been incredible and I partially dread the day he goes back to work. But, in the same way the Lord has so perfectly put things in place for this season of our lives, He will take care of us in the next. I know this, and yet in the midst of this turbulent time of adjustment, I forget. I think about the fact that we were in the process of placing an offer on our ‘dream’ house just west of Saginaw the day before the news of the layoffs got out. I remember the frustrating year and a half our house was on the market, only to have dear friends of ours become our tenants the month Joe got laid off – allowing us to move into my parent’s house in the interim and not have a mortgage hanging over our heads. I love that Joe’s grandparents handed-down their Chevy venture to us, for free, which enabled us to sell Joe’s little Cavalier and pay off our car debt, just 2 months ago. I’m thrilled that the Trooper’s union decided to reimburse us for our health insurance premiums, just the week before our insurance ended, so we would actually have insurance when Aiden arrived, and when his precious little heart gave us a scare. God has been SO good to us. Why on earth would I dare to think this beautiful provision would come to an end now? While God is rarely early…He’s never late. But this whole learning to trust thing – waiting until often the very last minute – keeps us in a state of clinging to Him. And this, sweet friends, is just the way it should be.
“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.” James 1:2-4
Monday, September 14th – 16 days old
Much has happened since I last journaled. Friday morning was our first appointment with Aiden’s Cardiologist. He had an ECG and at this point, with the medication he’s now on (propranolol and digoxin – for those of you who care to know), he is looking good! Then onto the Pediatrician for a follow-up appointment (seeing we had been ushered off to the ER in a hurry the Friday before). We received more amazing prayers in the mail today. Dinner involved indulging in pizza and sweet fellowship with dear friends of ours who were meeting little Aiden for the first time. Again we were abundantly blessed, not just by their generous, thoughtful gifts and a basket of delectable fresh fruit…but by the beautiful gift of a burden carried and a heart lightened in the midst of friends. Our lives are made so rich by the people who surround us!
And then Saturday came (our big boy is now 3 weeks old) and almost went…and, well, it’s true what our mothers said. Always take a pair of clean underwear with you when you leave the house. A purse would be good too.
After dropping Aiden off in Joe’s lap on the way to the loo around 6pm, my bathroom bliss (a mother’s haven of peace) was interrupted. Joe was looking for the stethoscope. While holding and stroking his little body, he had noticed that Aiden’s heart was racing. The SVT was back. My heart was utterly crushed with discouragement.
We had been taught, while in the PICU, how to use an ice-pack on Aiden’s head/face to bring his heart rate down. After trying this twice, and him being in SVT for over 25 minutes, we placed a call to his cardiologist and headed for the ER. Again, amazing friends stepped in the gap and welcomed us dropping Ali off on our way. Once in the ER, he was quickly taken from us, stripped…oxygen…heart monitor…IV (attempted numerous times as it always seems hard to find his little veins). With my head buried in the bed beside his little body, I wept as I held the oxygen mask over his face. While the cardiologist had explained that this early stage would be a delicate dance of getting his dosage right, it was still heart-wrenching to see him have to go through this all over again (although the intervention was much less drastic having had this bout of SVT last a mere hour…versus the original couple of days). The first dose of adenosine didn’t work in bringing his heart rate down. Thankfully the second one did, as the thought of his fragile body getting shocked again made my blood run cold.
Once stable, he was taken to the PICU for overnight observation. Joe headed home (with Alathea), while I stayed with Aiden…with no wallet or underwear to my name. I was, however, greatly relieved to find a chapstick in the diaperbag. Without chapstick, I’m absolutely positive my lips will crumble and fall off my face within a matter of hours. No handbag, money or undies, bad. Chapstick discovery, good. As usual, the doctors and nurses were wonderful – between the warm blankets and freshly brewed decaf coffee, I was well taken care of. Of course being a nursing mom has it’s delicious perks too, free food.
I was amazed to receive a phone call from someone I graduated from high school with. She tracked me down in the PICU to say, if there was anything we needed, she lived close to the hospital and could help. What a blessing!! And leave it to a delightful friend of mine to send me a text to make me giggle in the midst of our heartache that night…”My heart breaks for you! Be strong and Courageous for the Lord is with you wherever you go (Joshua 1:9). You really need to find a better way to get a hot shower! J”
We headed home later that afternoon (Sunday) after a meeting with his doctor and the approval from the cardiologist. His vital stats and levels still look great – his dose of the beta blocker ever-so-slightly increased so as to, hopefully, prevent further SVT.
Today (Monday) brought more beautiful mail and another cardiology appointment. This time for an Echocardiogram. We will hopefully get the results sometime tomorrow. A precious friend had taken our sweet Ali this morning – to free us up to attend the appointment – and kept her until 3pm, allowing me a Tim Horton’s date with my 2 favorite boys, a visit to the health department to apply for Medicaid, and after returning home…cleaning, laundry and email! It’s amazing how enjoyable it all is when you’re able to do them leisurely without whiney interruption! It was glorious. Apart from sorting through the 436 emails that poured from my inbox (over 400 of them being facebook alerts), it was an incredibly rejuvenating afternoon. Ali came home worn out from a fun day and promptly hit the sack for a few hours. More down time with my hubby, wee one and fam.
While the journey is far from over, we continue to keep our eyes fixed on the Lord as we navigate this rocky territory – heart weary, but excited to see what our faithful Father has up His sleeve for this little man’s life.
Wednesday, September 16th – 18 days old
I survived! I ventured out of the house this morning, with both kiddie-winkles in a brave attempt to see whether I would survive. And I did, I did! In fact, I had a blast catching up with a precious friend of mine and her 2 year old at Hawk Island, and then alone with my little girl (while her brother slept sweetly all wrapped to my body) at Tim Hortons. Yes, we have an addiction, and she’s picked it up…”bagel for Ali at Timmies please mommy…?!?”. At least she’s polite while requesting fuel for said addiction.
In fact, not only did I make it out of the house for the morning by myself, but my hubby and I ventured out for most of the day yesterday (Tuesday), for a pastor’s meeting in Almont (representing my parents – we’re helping them plant a church in Alma), and then onto the afternoon with dear friends of ours in Imlay City. After being brought a most heavenly meal by a precious family from church, we walked around the block to yet more delightful friends and attended the bible study they host in their home. What a full day of beautiful friends, fellowship and continued prayer for our little Aiden! Yes, our life is made so incredibly rich by the people who surround us.
The results of the echo came back. Our cardiologist says his heart is working perfectly! When we were at the office yesterday (after the echo) Aiden had a Holter monitor put on – 5 ‘stickies’ attached to his torso, connected to a monitor that records his heart rate for 24 hours. Our job was to record everything he was doing (sleeping, nursing, diaper change, crying, etc.) so they could see how his heart rate responded to the different activities. All was going swimmingly until this morning when I went to change his diaper and discovered one of the sneaky stickers was suddenly clinging to his onesie rather than his chest. Hmph. We have no clue how long the circuitry was not recording properly, so will most likely have to go back in and restart the 24 hours of monitoring. Oh well, it’s a tiny price to pay for further information on our wee one’s cardiovascular function and response.
Aiden is doing so well! He’s sleeping/nursing in 3-4 hour intervals at night, and has some delightfully alert moments (for up to an hour at a time!) during the day. Occasionally he thinks his alert times would be best displayed at night. I heartily disagree. But…he wins.
Alathea is adjusting well. Or, rather, we are adjusting well. We are learning how to better parent her through this fragile season of change. This sweet girl has gone through so much in the past few months, from moving homes, baby brother arriving, and then baby brother being in hospital…taking her mommy with him. We’re learning to be gracious and extra patient with her. It amazes me how just getting down on her level and making eye contact, while speaking as sternly as necessary, gets the job done so much more effectively than yelling across the room…”quit poking your brother in the eye!”. Yes, we’re all adjusting well to this crazy, beautiful life we now call our new normal.
By the way, you’re all going to be celebrities! In our little boys world, at least. I am deliriously excited to start putting together a book of memories, info/cards from the hospital and RM house stay, photos, this journal of course, along with the many incredibly comments – be it encouragement, support or prayer – you all have lavished upon us during this time! Please keep them coming! You are a huge part of what keeps us going – and keeps this journal coming. Really, I can’t thank you enough – this has proven to be such a satisfying and healing outlet for me as a mommy processing this journey, and knowing there are people out there following along, cheering us on, and covering us in prayer, just lifts our spirits and blesses our hearts.
We’re delighted to have been asked to speak at one of the leadership summits at Sparrow Hospital – an event that hundreds of the employees, including security, medical staff, doctors, administration, even the CEO of the hospital, will attend. Upon hearing our little one’s story, and our rave review of the stellar PICU staff, we were asked whether we’d be willing to share this journey with the attendees. Seeing my hubby and I love public speaking – not to mention the incredible audience we will get to share this miracle with – the answer was a resounding “YES!”. We’re also going to be writing a little article for the MSP Trooper’s magazine, seeing this situation has proven how profoundly blessed we were to have them reimburse us for our health insurance premiums once the layoffs were effective. It blows my mind how many lives our little 4 week old is touching already! What a radical, beautiful opportunity to express our gratitude – to our family, friends, extended support networks – but mostly to our awesome, powerful Papa!
At this point in the game, we continue to administer meds – 6 times a day (rather than 9…yay for no more antibiotics!) – and watch him closely. Because of the nature of his ‘condition’, and the potency of the medication, the Doctors have to tread so carefully in this delicate dance to figure out what amount of medication will work effectively in keeping his heart rate stable, without dropping it – or his blood pressure – too low. So, armed with this knowledge, while I dread it, I realize another trip to the PICU would not be the end of the world…simply a step ahead in perfecting his meds for this season of his life. While we still cling to the hope that the Lord will completely heal his little body and render his medication useless…we are so thankful for the brilliant medical team, and these medications, that are helping to keep his little body healthy until that time comes.
Below are lyrics to a song we sung in worship yesturday morning at the pastor’s meeting that absolutely took my breath away and melted me at the same time – this is truly our heart right now:
What have I in this life
But the love in your eyes
This empty world will one day fade
Only your truth will remain
Jesus, all I have is you
You’re the hope I’m holding to
I might weep but still my faith rests in you
As the heaven holds the skies
It’s your hand that holds my life
And your live will lead me on
When all else is gone.
Jesus, all I have is you.
Thursday, September 17th – 19 days old
Gosh, I adore this glorious late-Summer, early-Autumn weather. Warm sun, crisp breeze...aaah, if I didn’t think my uterus might fall out, I would attempt to go for a run. I’ll save that for doctor’s approval – just 2 weeks to go (but who’s counting? Oh, let’s see…my sweet husband! Ahem. J)
With my hubby off on a construction gig this morning, I was feeling particularly worn-out when after a night of nursing and meds, Madame Alathea decided to rise early! But, my sweet mother came to my rescue. She took a finally-sleeping Aiden, so I could go back into our everything-room (our room, Ali’s room, Aiden’s room and my office…all rolled into one) and catch a few winks before Ali woke up…and when she did…she whisked her away for breakfast and a veggie tales movie (as I quietly chant…”movies first thing in the morning will not kill her, movies will not kill her…I need my slee..ee..zzzzzz”). Oh, what would I do without my family and friends?
Speaking of which…with October just around the corner we’re hoping to hear something about the MSP recalls or, hopefully even sooner than that, about the positions available at Saginaw Township Police Department (Joe is in the final 4 and they’re hiring 2). As soon as he’s able to get back on the road we will start looking at houses (actually, we already have…2 days ago we allowed ourselves the joy of dreaming a little in the house department). After months of excitement and then disappointment over houses we fell in love with and then saw sell, while the layoffs loomed – we’ve tried our best to guard our hearts and just avoid the whole house-buying dream (our current house is being rented out to friends of ours while we stay with my parents – it’s been just over 3 months now). So now with the dream beginning to spark again, I’m having delicious visions of putting up a Christmas tree and having friends and family over to OUR home again. While we’ve loved the opportunity to stay with mom and dad for half the cost of our mortgage, it’s been really rough to have most of our lives stashed away in a storage unit and the bare necessities stuffed into one room (which does tend to overflow into the rest of the house, thanks to our 2 year old). I have such a mix of feelings about moving…I simply cannot wait to have my own space and rediscover all the goodies we’ve had in boxes for months now (from wine glasses and dishes to my winter clothes)…and yet I’m just a little terrified of being away from our friends and family and the support system we have become so beautifully aware of this past year, especially with two young children. And now with Aiden’s special heart, we have so grown to love this PICU and Cardiology team…but we’ll be over an hour away. There were moments early on in this adventure that I considered hovering, day and night, within a 5 mile radius of the ER. Just in case.
So I’m processing a ton in this area. Utter excitement and complete fear. And yet I know that it’s rather ridiculous to feel this way because in the same stunning way God has met every single need up until now – what with my hubby being home more during this rough time, our insurance being covered through September, my parents taking us in, etc. – He will indeed provide the support, encouragement and friendship in the next season. Or at least the money to provide the gas for my long weekly visits to Lansing! J
Speaking of delicious friendship…totally forgot to mention more of the amazing ways we’ve been loved on this past week! I was amazed to receive a phone call late Saturday night (after posting on facebook that we were headed for the ER) from someone I graduated from high school with (and don’t actually know all that well). She tracked me down in the PICU to say, if there was anything we needed, she lived close to the hospital and could help. What a blessing!! We’ve received more beautiful cards and prayers in the mail that continue to knock our socks off, along with mouth-watering meals (fresh and frozen), and a lovely scrapbooked journal – with the text and photos we had posted in Aiden’s journal. How awesome is that? Aren’t you all just breath-takingly fabulous?!
On another absolutely fantastic note, we just got a call from the cardiologist’s office – Aiden’s holter monitor did contain enough information (despite one of the stickies coming unstuck) to show that his heart is responding beautifully to his medication. The doc is thrilled with how things look and wants to see us in a month (unless, he said, that length of time scared us…then we could make an appointment for 2 weeks. Are you kidding me? A month it is!). Hallelujah! This is indeed good news!
Isn’t it so true that it’s the valleys that make the mountain-top moments what they are? Without the ‘down’, we wouldn’t be able to distinguish the ‘up’. And its life’s fullness of these ups and downs that make it the exhilarating, heart-poundingly spectacular journey that it is.
Monday, September 21st – 1 month old
It has been a full 4 days since I last journaled, and yet as I sit down to type…little of it comes to mind. Aaah, yes…momnesia.
Our little champ is still going strong, despite a brief scare this morning (Monday) when his heart seemed to race, then slow, then race and then slow down again. Its amazing how easily I panic when checking his heart – considering his history {albeit an incredibly brief one} with SVT – when it seems higher than it “should” be. I seem to lose all my bearings and just don’t know what normal is. He is, however, just peachy.
As we settle into his medication routine, I’m amazed at how comfortable we’ve gotten – to the point of almost forgetting to give them to him – and then having near heart-failure when we realize what time it is. Odd. Just when I thought I wouldn’t be able to function without my eyes glued to the clock for fear of missing a dose…I’m functioning just fine while completely forgetting to look at the clock and almost forgetting to administer his meds. Yikes. This is especially odd (ridiculous, actually) considering both Joe and I have each medication/time scheduled into our blackberrys. You would think life with a newborn and a rambunctious 2 year old is just slightly chaotic. Almost.
I cannot even begin to express how incredibly, completely, delightfully and lavishly we’ve been blessed this past week. The astonishingly fabulous mail continues to come in…cards, scripture versus…and wonderful surprises! With our 6th anniversary just weeks away, a dear old friend of ours (who likes to spoil us), sent us a gift card for dinner and a movie. Oooh la la! THEN…some of my wonderful 121st wives (all married to – soon-to-be-back-on-the-raod-we-pray - hot men in blue!) chipped in on what’s bound to be a delectable evening at the English Inn. How awesome is that?!? THEN…one of the Trooper’s from the post where my hubby was posted (whom I’ve never actually met), surprised him with some moola to buy me an outfit and take me out to dinner! WOW! And THEN…yes, there’s more…another sweet friend of ours blessed us with some money for yet another spectacular date night. Never have I been so thankful that our precious little babe takes a bottle. We’re goin’ out! Thank you so much, beloved friends – we stand amazed at how beautifully taken care of we have been – so much more than our needs have been met! We are officially sockless. Our socks have been SO blessed off by your thoughtfulness and generosity that our toes have been chilly for days. Okay, so that was silly – didn’t come out nearly as sweetly as I intended it to. So I’ll just say, from the bottom of our mushy little hearts…”Thank you, thank you, thank you!”.
Yesterday, we - along with my sister and her hubby and another couple, dedicated our little babes to the Lord during church – it was an incredibly sweet and powerful time. Joe’s grandpa and grandma drove out, along with another close friend and some family. It’s funny – we’ve talked about dedicating Alathea for over a year now, and just never officially planned or scheduled it. Amazing how nearly losing a child motivates you to make that public declaration that ultimately; our children belong to God anyway and are only entrusted to us for a time. And how grateful we are for that time. Yes, It’s a simple fact, but its good for us to realize it and speak it out. There’s power in the spoken word.
My parents suggested dedicating our two together as their first official dedication with the new Alma church plant – which is exactly what we did. We selected scriptures we felt were particularly meaningful for each child, and just spoke life and health and prosperity over each of them. A tearful time was had by all.
We are all currently down for the count. A blasted cold has snuck in and visited every one of our family members (sniffle, sniffle, sneeze). Even our little man had to have his nose sucked out this morning so he could nurse. Not much fun, on either side.
Miss Ali continues to be an exhausting blend of delightful and difficult. There are moments I just want to gobble her up and kiss her all over (like this morning when we were driving to Hobby Lobby and she was sweetly saying, “I like puppies, mommy. I like duckies, mommy. I like cows. Mommy, I like horsies. Horsies are my friends. I like skeletons, mommy. (yes..you read that correctly – she has an undeniable interest in the human body right now), I like cars, mommy….etc. etc.”). And then there are moments that I’m tempted to sell her cheap! Like this morning before said trip to store, when time after time she refused to listen – or even make eye contact while being spoken to – and kept throwing a hissy fit when her cousin dared to eyeball one of her toys. Really…and it gets worse I keep hearing?!? I suppose that’s why they look so sweet and innocent while they’re sleeping – it melts are hearts and motivates us to keep them.
We’re still waiting to hear back on the job front for Joe – hopefully we’ll hear something this week or next. Also waiting on the next step for the Medicaid process. We’re expecting to hear back from Children’s Special Heath Care Services with news regarding whether Aiden’s ‘special heart’ qualifies us for their coverage assistance (this will help cover copays for the numerous cardiology and pediatrician appointments we’ll be making). So the waiting game we will continue to play…we’re becoming awfully good at it indeed!
So in the mean time, we keep on keepin’ on, knowing that no matter what the future holds, we have no question as to who holds it. God has more than shown Himself faithful and as this story continues to unfold, we more clearly see His fingerprints on the events of our lives. We’re learning to live in the paradox of God – while His ways are completely and utterly unpredictable, it’s His character that never changes…He was, He is, and He always will be …completely and utterly GOOD.
