Saturday, June 11, 2011

Welcome to Children's

One year ago:
A sunny Saturday morning - Mass all together as a family, and then Joey's one week check-up. I took a deep breath of confidence, knowing that my wonderful experienced pediatrician was going to check Joey's breathing. Looking back, I'd bet that his throat had that same lump that I'd been fighting for days. He later confessed that he knew something was wrong, but he had no idea just how much.

"Just a quick chest x-ray to check things out. I know we like the wait-and-see, but if I tell you to come back Monday then I won't sleep all weekend." I brought Joey to Frederick for his x-ray , and waited for the radiologist to read it. Our nurse from our doc's office called, telling us that Dr. Lee was on his way to talk to me. I knew something was wrong, but that was really above and beyond the call of duty. It took forever, but really I wasn't minding the time to sit in the quiet and nurse my little Joseph. Snuggle him. Kiss him. The clock was pretty quiet compared to the ever-persistent pounding of my heart. I studied every inch of his perfect little face while sitting in that uncomfortable waiting room chair.

Dr. Lee appeared, apologizing for the delay as he'd been to see the neonatologist after being dissatisfied with the initial report. Joey's heart wasn't the right size. We dialogued medical terminology and my brain shifted into "nurse" mode and I followed him to the ER, from where he would be transported to Children's National Medical Center in DC. Dr. Lee, my kind and faithful pediatrician whom I have trusted with all 3 of my kids, proved that he is every bit as compassionate and caring as he is knowledgeable and professional, as he gently put his arm around me, and stayed with me until he knew Patrick was on his way.

I chatted with the ER nurse while gently stroking the top of my Boy's soft hairy head. Patrick was there by the time the flight paramedics from Children's arrived, and it took innumerable tries to get an IV in my tiny little 8-day-old newborn. (We would find out later that it was part of his pathology that his veins were under-developed because of his heart disease.) I cried watching him laying there, feeling helpless and for the first time confronting the unknown.

"Why can't I be someone who can't eat in an emergency?" I thought as we grabbed a burger on the way to DC. We started the prayer-chain phone calls and texts to family and friends-who-could-be-family. No we don't really know what all is going on, we just know that his heart is too big and we're heading to DC for an echocardiogram to tell us more. He's in good hands, safe now, and we'll know more in just a few minutes. We had no idea just how MUCH more.

It's a wonder Patrick had any circulation to those fingers left, as I held in hand in the elevator, taking comfort that we faced this fear together. There were a lot of people in Joey's room: the NICU nurses offered us a gentle smile. The doc with whom we'd spoke on the phone was giving us a very quick overview of the possibilities and how we might treat them - I think he mentioned 3, but he wasn't very convincing. The 2 cardiologists performing his echo. The 2 quiet ones standing to the side, introducing themselves as Cardiac ICU docs. And there, in the middle of it all, my boy. Was that him? My Joseph Thomas in the NICU bassinet with an IV and wires and quiet. He wasn't crying or fighting. He was fighting so hard for his life he had no fight left for probes or wires. Hey Baby Boy, how'd you like that helicopter ride? We can't tell your sisters, understand? They'd be so jealous.

The cardiologist introduced herself, and ever since that night her name has been music to my heart. She had us sit as she herself pulled up and chair and drew us a picture that has been branded in my memory. The names, terms, explanations, all permeated with compassion and patience. Thank you, that was a great explanation, and I don't think I have questions yet. I wouldn't even know what questions to ask. I might be calm, but my head is spinning. I was still in nurse-mode, where I could understand and process what was going on with a touch of rational thought, but I was still a Mama scared for my Baby. waiting for the surgical meeting on Monday afternoon, got it. That's a good sign, yes. WhAT DO WE DO UNTIL THEN???

Those quiet docs came out of the corner explaining that they'd be assuming care of Joey downstairs in the Cardiac ICU (CICU). Well, it's official - we have a cardiac kid. I nodded. I think I knew - obviously I didn't know exactly what was wrong, but I know that I wasn't entirely surprised. Then the hustle and bustle as they readied Joey for his next big trip.

One more memory from that first night - I have no idea if I slept or ate or took my eyes off of him. What I do remember is coming back into the room after they put Joey on the ventilator. RELIEF. After days of being scared watching him breathe so fast, so shallow, I was finally relieved to see his chest rise and fall is slow, steady intervals filling his lungs with Oxygen. I had no idea what was in store for us, but at that moment I knew he was finally resting, and that breathed relief through my whole body.

I look at my One-Year-Old Boy now, giggling and taking deep breaths, and every day I whisper a prayer for those amazing doctors and nurses. Thank you for being there that night. Thank you from the bottom of our hearts.

Remembering the First Week

remembering one year ago...

The first week home with a new baby is exciting and terrifying all at once. Your sisters adored you from the very first moment, and I was amazed at how well you ate and slept! Yay for a happy easy baby boy! I remember thinking you were getting more and more sleepy; you did sleep a lot. I remember wondering why you didn't lift your head off my shoulder or smile little baby smiles. But oh we loved having your there! Little fingers used "gentle touch" and many loving arms held and rocked you. The crocheted blanket from your great-grandma wrapped loosely around you, the millions of requests from your sisters to hold you, your precious face smushed against my shoulder.

But I also remember the nightmares. I would nurse you, lay you in the cradle beside our bed, and try desperately to shake off the fears. I would jump out of bed in the middle of the night just to watch you breathe. My heart would pound in my chest as I whispered terrified prayers. Daddy would ask me what was wrong, and I'd convince myself that it was all new-baby jitters. With our third baby? Yes, just a little hormonal and paranoid. We're fine. I'd sheepishly climb back into bed, embarrassed at my overreacting.

I remember sitting on the swing on our back deck on a gloriously beautiful day while you slept beside me and I read (all about our new camera). Daddy and Gram had taken the girls out for the day, so you and I were snuggling and resting. I was breathing in the scent of your beautiful little head as often as humanly possible. You had been sleeping for a while, so I unswaddled you to help you wake up to nurse. Your toes were so dark - so purple?! Touching them gently with my fingers, they were chilly, even though they had been wrapped up in a blanket. My sweet little baby boy, with your arms relaxed at your side and no attempts to wake up. I love watching babies breathe their sweet gentle way, but as I watched your chest my heart became heavy, my throat tight. Your chest went up and down so so fast, your belly retracting under your ribs with each forced exhale. The sides of your nose moved with each breath. Was I overreacting? I was just emotional. right? I just needed more sleep. right? You just needed to eat! That would definitely make me feel better. right? I scooped you up and nuzzled your soft neck like always. What is it about baby necks that drive me wild? Yours was no exception; oh I loved that smell and that soft skin! "Wake up silly Boy and eat! please?" You couldn't nurse without taking breaks to breathe.

"Please let there be nothing wrong?" I prayed that a million times the rest of that day. I was really looking forward to your check-up the next morning. For the first time in my memory I wanted nothing more than to look foolish as Dr. Lee (our pediatrician) assured me there was nothing wrong. Surely he would just give me a friendly pat on the back and tell me that some babies breathe fast and sleep more. My heart knew, though...

Saturday, June 4, 2011


Dear Baby Joey, today is your first birthday! You are ONE year old!

Has it already been a whole year? Has it only been one year? Mister Joey, your presence in this world has sure stirred up a lot of lives. All for the better, I believe. People love you, Joseph. And looking at your face light up as the center of attention, I would say you love them, too.

You are such a special little Baby. You are charming, delightful, and joyful. Every day I whisper in your ear about how much I love you. You are my perfect gift. You are wonderfully and fearfully made. You are all fair and there is no flaw in you. You shine with the light and Love of God. You remind me of all things beautiful and holy. God made you perfect, exactly the way He intended and I am thankful for that.

This year has been full - of doctors visits and hospitals, of sickness and fear of sickness, of concern and anticipation and braving the unknown. This year has also been full of wonderful surprises - of a few quick recoveries, of smiles, of good doctor reports, of meeting amazing caregivers, of growing and developing well, of belly-laughs and baby babble. We celebrate each day with wonder and awe at a God who loves you, little boy, more than we can ever fathom. My very being could burst with love of you and thankfulness for each precious breath you take.

Our first year together was quite the adventure, and while I certainly hope this next one is a bit calmer, I still would not trade one second of your journey for anything.

I love you, Joseph Thomas. Happy Birthday!