Saturday, December 10, 2011

Joey Loves:

The Beach

My Phone

Cookies! (and getting into mischief!)

Cars and Trucks

Friday, September 2, 2011

Another 1-year-ago Memory

Remember one year ago today? I sure do. In fact I have such a vivid memory of it that my stomach gets tight when I remember sitting in that waiting room outside the cardiac cath lab.

There are a few silly things that stand out in my memory, like playing with the music on my new I-Pod Touch that Patrick had just given me for my birthday. We had been anticipating a one-night stay in recovery, and he wanted me to have something to do. We were there for 8 days...

Perhaps the most profound memory of that morning was during the 20-minute wait of eternity, when we knew they were performing CPR, that our precious baby boy's heart had stopped and they were shocking it to start again. No one else was in the waiting room with us for a few minutes (we had an almost steady stream of Joey fans to come offer comfort and support) and Patrick and I were holding hands and trying to pray. Patrick said to me "you know he's alright." Actually I'm not confident right now. I don't know if I'll bring our baby home. "He's been baptized and confirmed. He's fine. It's us we're worried about. Not matter what happens, Joey is fine." Whoa. Now that's what it means to keep our eyes fixed on a God who loves us, in total surrender. Not that it was easy, not that I suddenly felt fine after that, but in one short moment my strong husband, just as scared as I was, kept our heads pointed in the right direction.

Well, here we are a year later. Out and about with the kiddos, playing and wrestling an ever-increasingly active and determined little boy. He looks perfect, with his bright smile, and charming demeanor. And yet as we reminisced about last year I began to wonder if I will ever really look at Joey the same. I say probably not, but that's okay with me. None of us are the same after last year, and we can thank our ROCKY for making us better!

Monday, August 22, 2011

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.

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.

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!

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.

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!

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.

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!

Sunday, July 3, 2011

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!

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!

Wednesday, May 18, 2011

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.

Saturday, May 14, 2011


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!

Friday, March 25, 2011

Turning a Corner?

Well it seems that Joey has not given up all of his antics - he still likes to keep up guessing, even when it comes to silly little matters!

I wrote about his stubborn refusal to eat, and lo-and-behold he decides to learn to chew! Thanks to those little "puff" snacks for babies, Joey learned how to have something in his mouth without gagging. Thanks to getting the chewing motion down, he is now enjoying eating foods with a little more proficiency. He is still mastering the baby-mush, but I'm thrilled that he's made some progress at all. Oh, and he loves our homemade applesauce, of course. :) We say "bite" and his little baby-bird mouth opens right up!

This, of course, is not applesauce.

His gross motor skills are lagging a little bit, and for a while I was really enjoying the Baby who was content to sit still and play! After a while, though, we started talking about whether or not we should have him reevaluated for therapy. (He qualifies for PT and OT based on his complex diagnosis alone, and we are free to pursue it any time until he turns 3.) All of a sudden a little switch turned and he is slowly opening his eyes to the possibility of motion. He turns himself on his belly all around, especially in the pursuit of someone or something. He is trying really hard to pull himself up, and gets really quite excited when we offer him a little help to do so. Just today he stood holding on to my knees without any other support!

His best source of motion is on his bottom - his wiggle/scooting abilities are growing rapidly. I will find him several feet away and facing a different direction than when I walked away just a few minutes before. The interest is there, the motivation is growing, now we're just waiting for the coordination to come through.
He loves clapping his hands, and plays patty-cake when Bella starts singing it to him. He laughs and smiles and blows raspberries, and you have never heard or seen anything more beautiful.

Monday, March 14, 2011


RSV is a relatively common virus that often presents with a bad cough or a nasty cold. You can read more in-depth information here.

A big shout-out to the makers of Synagis, the RSV vaccine. Also a huge thanks to the insurance company that is currently paying for this very expensive vaccine for my Little Joey!

Because of his CHD (Congenital Heart Disease) Joey is blacklisted from getting serious respiratory illness. It just isn't allowed. A pneumonia or RSV infection would very likely land him right back in the ICU, with potentially complicated treatment. Thanks to advancements in modern medical research, however, he is now receiving a once-a-month "vaccine" against RSV, and it seems to be doing it's job well!

We were at the pediatrician's office last week with our hacking coughing little man, who we discovered had bilateral ear infections. While there the doc mentioned that his symptoms were presenting like the very frequent cases of RSV he's seen this winter, but thankfully it does not seem to be affecting our Joey poorly at all! Joey is coughing a lot and breathing fast (tachypnea) but is in no distress and his *little* self is handling it quite well! Praise God!

If he did have it, it was so mild as to not be the cause of any concern. This is great, because he has other things to be doing than sitting back in the hospital :)

Saturday, February 26, 2011

More Eating Challenges?

Take a look at that chub. Clearly this boy does not have nutrition issues.

Yet he has decided to give us some trouble with his eating habits. Don't get me wrong, he loves, loves to eat. Obviously. But really what he loves is his bottle. Solids? No thanks. Actually, NO WAY!

At eight months he should be eating baby food. Shoot, at 8 months his older sister was proficient at eating meat. But he does not want to chew anything. He does not want carrots, sweet potatoes, peas, pears, applesauce. What baby do you know wants to spit out perfectly good sweet bread?

He's growing the proper hardware just fine. Take a look at that Baby Shark! He has 4!!!

Now if only he would decide to use them.

Thursday, February 24, 2011

So Fast

Time going by, that is. I would not be exaggerating to say that every day I look at my Big Baby Boy in utter amazement. Amazement at the wonders of modern medicine, amazement at the progress he's making, but mostly amazement at God's Grace and the power of prayer.

I realized the other day how far we've come; it feels like we've (happily!) entered another world. Joey was in the hospital on 4th of July, Bella's birthday, Memorial Day, Mama's birthday - we joked we weren't making plans for Thanksgiving. We didn't even want to think about Christmas. We have celebrated every day since then as if a holiday with Joey, because it is SUCH a truly awesome gift to have him home and doing so well!

At his most recent cardiac follow-up our favorite cardiologist uttered some amazing words - "Despite all Joey's been through and how sick he was, the only real remaining ongoing issue is his aortic valve." His Only issue??? My little complicated boy only has 1 more problem??? Of course, it is a BIG problem. But then came the next amazing statement - "I would guess that we won't have to do anything else for that valve for a good 4 years or so." FOUR YEARS???? My little baby can grow and be normal and (hopefully!) no more hospital stays for several years??? God only knows what medical advancements there will be before Joey needs anything major again??? And then of course, came the final statement - "I'll see you in about 4 months!" Four. Months. MONTHS. This amazing doctor who we had been seeing every 2 weeks will next see *her special Baby* when he is almost 1 year.

The only kind of stickers Joey will have on his chest for a while!

God is amazing.

Thursday, February 3, 2011

I Am

I Am :







20 pounds, 8 ounces!

I am Joseph Thomas, "Rocky," and I am 8 months old!

Friday, January 14, 2011

Strike 2! ...And MRI try 3 upcoming.

One of Joey's issues that wasn't an issue before because it wasn't one of his ISSUES was an issue this morning. Whew.

So I've written before about the three major problems that needed attention: his aortic coarctation (fixed!), his VSD (fixed!), and his stenotic valve (okay for now). One side effect of all of this stuff prenataly is that he has small blood vessels. We've seen this time and time again now, but it was never central to his recovery. I remember waiting in the ER room of our local hospital while the flight staff tried for over 30 minutes to get an IV in his arm before flying him down to Childrens', and when going on ECMO, the cardiac surgeon had to use a smaller vessel to go into his jugular vein because it was so small.

So it happened again today. :) Five nurses and two anesthesiologists couldn't get an IV in him anywhere. ugh. So we have to reschedule. Kate went up and talked with our friends on CICU and HKU, where we've spent so much time, and they told her that we could reuqest a cardiac anesthesiologist team, which would hopefully facilitate the IV since they do it more often!

So thanks for your prayers. They won't go un-wasted; we'll make sure to use them up on something good. :) We'll let you know when it's rescheduled.

Thursday, January 13, 2011

MRI: Take Two

Tomorrow, January 14th, is Joey's brain MRI. At least, we hope it will happen this time. The little Guy has a cold yet again, and this time is on antibiotics for his first ear infection. Seems that the kid takes after his big sister with his ears, but with him is seems like such a minor issue. "Antibiotics? Sure, they're easy. Ear Infection? No big deal. He's had worse.

So tomorrow early morning Joey and Mama will be making the trek down to see if he's safe to sedate, and therefore get this out of the way. Having the MRI is really just follow up for the small brain bleed he had while on ECMO, and also to check for any damage after his cardiac arrest. Giving how well he is developing nobody is worried about the findings; this is really just a follow-up to see if there are any concerns for the future and to establish a baseline.

Speaking of development, everyone is SO pleased with our little Rocky! He is sitting up unsupported, and only falls occasionally. Mostly when there's so much activity that he's trying to watch and loses his balance. He reaches for toys and plays a lot. Just the other day I watched as he searched for a toy he dropped, which is a huge milestone! Joey is also obsessed with his toes, which is another good indication on the normal baby timeline.

It is an interesting perspective to know that my son has a few minor delays and to not be concerned in the least. Not at all. He is my Miracle Boy, and every little thing he does is cause for a party. Well, despite the minor delays he has now he is likely to catch up just fine over time. He is still writing his own book, and all we have to do is encourage. It is a beautiful story.

My Happy, Social boy loves to babble! He babbles all. the. time. Sometimes it's hard to hear about the din, but often he will make sure he is heard! He laughs a lot, too, and there is no sound more beautiful than baby laughter!

Please pray for us tomorrow. Joey has rocked the sedation multiple times now without any problem. According to plan he will not even be intubated, but will breathe on his own the whole time. He just has to be very, very still. Then they will wake him up, let him EAT, and we will go home. Sounds so easy, but there are still a few little butterflies that will come later tonight for a Mama who has seen her baby go through so much.

I will update as soon as possible with the results!