14 Months

The Stats:
Weight - 24 lbs 10 ozs. This actually "drops" him into the 60% for weight, a good sign since his mobility has taken off.
Height - 30.5 inches. Short. Welcome to the my world, kiddo. But not as short as his sisters (percentile-wise) so maybe there's hope for him yet.

Food:
LOVES! Despite the fact that he still has the strongest most sensitive gag reflex in the world he loves to eat and is happily exploring new textures quite well. Of course his favorites remain easy finger foods, probably just for the necessary caveman killing instinct. His seat is always a mess.

Communication:
What a noisy boy! He talks constantly - surely just trying to be heard over his sisters! His verbal words are Mama, Daddy, ball, bottle, up, cup, pop, Papa, open, outside, all-done, again, and I'm pretty sure "mine." He also signs a little bit, mostly "more," "again," and "eat." Aside from that he makes noise and mimics sounds all the time! He also loves to get LOUD!

Play:
Cars and Balls, of course! He's such a boy, climbing over anyone and everything to get to a ball or truck. He vrooms and throws with the best of the boys! He loves his music table and building/knocking down block towers. I love that he initiates games a lot, too. He will get my attention to play patty-cake or peek-a-boo, and loves us singing "Wheels on the Bus" which he signals with "open!" while opening his arms wide. He's quite happy to play independently, too; he'll pull his basket off the shelf and dig through looking for toys and books and play quite contentedly.

Sleep:
ugh. My worst sleeper. To be honest, we've spoiled him rotten with sleeping with us and never on a schedule, plus we've never really let him learn to settle himself. He now screams until he throws-up every time we put him in a crib and he fusses for milk in the middle of the night. We keep saying we have to fix this, but nobody is really eager to make this boy cry in the middle of the night. Just the touch of a hand settles him right down next to us and melts our hearts. Yikes. After reading several sleep books by "experts" and polling everyone I can think of, my conclusion is that we're doomed. And he knows it, too!

Temperament:
Happy Happy Boy! Playful, happy, silly! (well, as long as we're not talking about sleeping arrangements that is...) He is easy to please, loves to be around people, loves to be entertained or to chill by himself.

Mobility:
A fast crawler either on hands and knees or hands and feet. He doesn't seem to mind hard or scratchy surfaces which is reflected in his perpetually scraped-up knees and tops of feet. He has not been super eager to walk. Just in the past few weeks he is starting to use walking toys across the room, but mostly still with our prompting. He pulls himself to stand on everything, though, and cruises along anything. The pediatrician judged Joey's overall development to be in the 12-month range, which is pretty darn impressive given how much catch up he has had to do!

A Birthday Boy's Party

Wow did we celebrate! Wonderful family, friends and prayer buddies delighted us by their presence at Joey's first birthday party.

It was a beautiful day at a perfect location. Perhaps the best part was the open area and playground for all the KIDS!!! Actually, we had about 60 kids there. No wonder I didn't get any cake.

Speaking of cake, JOEY loved his piece! Maybe a little sticky at first, but once that taste of chocolate passed his lips, there was no turning back. Actually, I'm not sure in the end just how much of the cake did, indeed, pass his lips. I do believe the majority stuck to his cheeks; they are quite sizable obstacles, you see.

Joey is quite the spotlight-hog; he just adored all the attention from everyone! Watching the kids run around, flirting with anyone who picked him up, and eating everything offered made him a happy little birthday boy.

It was such a joy for us to be able to celebrate with so many wonderful people who have showered bushels of love and prayers on us in the past year, especially in that first 6 months.

As for Joey, with all that happy socializing, I do believe we wore him out!

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...

HAPPY FIRST BIRTHDAY!

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!

Party Time!

Can you believe that our JOEY is about to turn ONE YEAR OLD?!?!?!?!

To celebrate this AMAZING event, we are having a PARTY! We are rolling the celebration of him being home, staying home, and turning 1 all together for a great party.

There are so many people who have followed his story with prayers and support that we are opening the invitation. We are having a party at a park in Mount Airy/New Market, Maryland area on Saturday June 25th. This is our best opportunity to say "THANK YOU" to everyone who has given us so much love and support for all these months.

If you are in the area and would like more information, please email me at kateandpat (at) gmail (dot) com.

*Updated to reflect the change of date. We had a scheduling conflict to resolve.

Crawling!

Well, it took him a while to decide to move, but once he did...

... there he goes!



Less than a week later, now, and he is movin' and groovin' like a pro. Faster and faster across the floor, chasing toys, delighting his sisters, challenging his parents.

Of course, movement also coincided with his ability to put small things into his mouth. We are getting busier by the second!