My Walk to CHOP in Pictures

I think this might be "Greek Row." Gorgeous shade by age-old trees. So cozy.

Just another view from within the campus. Beautiful old buildings, people everywhere.

One of these days, i will stick my head on the "L" for another picture!

A giant button sculpture. Kinda neat.

One of my favorite food truck vendors. Cheap, fast, fresh and best of all: Yummy!

Henry's room faces out the front of CHOP.

The geometric shapes at the top below the words in 'CHoP' glow colors at night.

155 yrs old. Amazing!

The view of the ER from the 6th Floor bridge area.

WELL HELLO!!!! A very happy smile greets me.

Hey Mom... check out my colorful bracelets!

Mom's Eye View of snuggle time.

Take a nap, buddy... s'cool with me.

Three's a Charm

Hank's three months old today!

Not a care in the world, snoozin' away...

When i returned from my weekend at home, Henry looked so good to me. His face was bright, eyes clear, alert. He is basically the same as my last thoughtful entry. The only new 'news' at this point is that one of the cardiologists on the unit, Dr. Shatner, approached me yesterday to discuss Henry's cleft lip/palate game plan. If you'll remember, we had an initial, positive consult in Rochester to discuss his options and to meet with the CNP there. That was on Good Friday. By Easter Sunday, we were back here in Philly, so a follow-up appointment the next week never happened.

Dr. Shatner was telling me that CHOP's cardiac anesthesiologist was concerned that Rochester was not equipped to handle his heart anomalies and anesthetizing him properly. I politely countered that worry with the fact that we were offered, basically, two options at birth for Henry's care: Rochester or Philly. We picked Philly. So i can't imagine why Rochester would not be capable.

However, there is certainly something to be said about Henry establishing himself at CHOP. *EVERYONE* here is very familiar with Henry. Nurses who do not have him for their shift come back to say 'hi' and to see how we're doing. The anesthesiologists basically say "hi Mom... same ol same ol" every time they need consent (no, not literally, but you get it). There is also something to be said about 'recreating the wheel' and the avoidance of such.

I was all for using Rochester, on Good Friday. And to be honest, i haven't put much thought into it since we've been here, especially since i was assured that time was not "of the essence" in getting started. The cleft lip repair can start anywhere between 3 to 6 months and Henry, at the time, was only 2.5 mos. old. Now that he's 3 mos old, chit-chatter is more active.

So my wheels have begun turning again. This will be news to Ron as he reads this. And for now, no decisions have been made. But the more i think along the lines of my last long heart-felt entry, the more I'm wondering if it WOULDN'T be best that Henry receive his cleft repair here. In case you are thinking "well, DUH, yeah, why WOULDN'T he?," here are a couple easy reasons. One, the biggest: location; Rochester is closer. Two: If they choose one repair option over another (yes, there are options), it can be a difference of weekly visits versus bi-weekly or even monthly. This is pre-operative. I think that once he receives the main surgery for repair, there is only a follow-up once and that is that. IDEALLY.

But that's my point - Henry doesn't seem to be fitting any sort of schedule about much of anything, and if we started cleft lip repair in Rochester and he was brought back to CHOP spontaneously in the middle of that process, then we'd have two facilities trying to 'work on him' at the same time versus just CHOP.

Much to consider. Nothing CRAZY, but at some point soon, a final decision will need to be made.

Oh Henry - - I love ya, buddy. You looked at me today and smiled and then went back to 'runnin' in my arms, your limbs chugging actively. And the best part? You started TALKING to me! Cooing and ahhing and oohing. Just so content in your little vibrating bouncy seat (where's the adult-sized version?) watching me change your bed linens. And we've been enjoying Jeopardy and Wheel of Fortune every night too, haven't we? A Telford Family tradition, it seems. Hank is frustrated with the idiots on Wheel just as much as me. Just last night he yelled out, "Oh C'MON - - why are you buying vowels when you OBVIOUSLY know the answer!?!?" Then we high-fived.

"Look Into My Eyyyyeeesss"

Oh my darling Sam... I'm imagining all the girls in your future swooning to your charms...

Home Sweet Home

I took a few days to go home. Henry was actually in a 'good place' to leave - stable, feeling better from his rhinovirus, and just hanging out getting IV antibiotics for a chest infection. As I've mentioned to a few people who ask how Henry is doing: Just looking at Henry's demeanor, you'd never know the little guy was sick. He's always either alert and lookin around, exercising his arms and legs, or snoozin. And occasionally, especially lately, i get a big SMILE! He never shows any sign of pain or discomfort, and that makes us feel so good to know.

I got home Thursday evening to a VERY happy and lovey-dovey Sam. Within a few minutes of walking in the door, he was telling me all about watching the Star Wars movie and showing me his lame Chewbacca impersonation (read: needs a LOT of work. haha). He seemed so different and OLDER to me. He always does when i'm gone for a while. He felt like a 7 yr old to me, not a 4 yr old. And when i put him to bed and walked thru Thom's room, and peeked into his crib where he lay sound asleep and SO CUTE, *HE* looked like a 4 yr old. How does that happen!?



The weekend was spent hanging out together - lots of playing, lots of snuggling, lots of wrestling and tickling and kissing. And sure, some reprimanding and a couple time-outs, but hey. I was able to spend a lot of 1:1 time with each boy, as well as with them both together. I was getting a total kick out of Thomas. That boy is always laughing at SOMETHING. If he's not laughing from me tickling him or flipping him over my shoulders, then he's riding in the car, looking out the window and then spontaneously starts laughing. That kid is FUNNY!! He's still not saying any distinguishable words (i was told 'uh oh' and 'wow' don't count. Booooo!), but he certainly enjoys having whole conversations in "Thom-speak." Lots of babbling, lots of giggles. No denying that kid is HAPPY.

So the reset button has definitely been pushed. I have been refreshed - spiritually, emotionally, lovingly. The roots to my well-being is my family, and when MAMA HAPPY, everyone happy! ;-)

Wednesday Update 10pm

Henry, it has become clearer to me lately, is a mysterious little guy.

Let me clarify my thoughts.

When he was first born, i physically saw his cleft lip and palate. Despite the reassuring words from the delivery doctor and nurses, I still had to come to terms with my newborn's appearance straight from my womb. I spent that night crying and giving myself a pep talk and by the morning, when i held him again, I felt different. Positive. Loving. This little stranger given to me. I could get used to him. He was a keeper.

Later that morning, a somber pediatrician came to my bedside to say a heart murmur was detected in Henry and upon further examination, a more serious condition was diagnosed. Henry had a congenital heart defect that needed immediate care in a facility more equipped than Arnot. That quickly meant Philadelphia and i spent some time crying about that. Just as i had gotten over tears about his appearance, i had a new, less superficial worry to be concerned about.

A few days after being at CHOP, we had a meeting with genetics. It was in that meeting that Ron and i learned about a more determinate factor at play: a chromosome disorder. The very disorder that created these complications in the first place. The root of it all.

And more tears.

More often than not, i hear from MANY of you the sentiments of hope, the wonderings of "i don't know how you're doing it" or "you are so strong." And those are all more than welcome, and oftentimes, more true than not. I AM strong, and i AM realistic. As is Ron. I use the first person in writing this because *I* am writing, but please keep in mind, Ron and i have had MANY MANY open-hearted, deeply introspective discussions on this topic. Good, bad and ugly. Theoretic, realistic, emotional and unmentionable. We are in concurrence with everything related to Henry.

But it is with this most recent visit to CHOP that i'm presented a new outlook. A new perspective. Henry is a MERE two and a half months old. That's it. Just a blip on his overall life. Our overall lives. But in this time, it's occurred to me that Henry is complicated, and will BE complicated and I naively was not prepared for this.

There was something about the discussion i had today with his primary cardiologist Dr. Ravishankar and an attending cardiologist Lisa. They sat with me for quite a while and we talked about everything that has been going on with Henry and what might come to develop. Ron and I, at one time near the beginning, thought that Henry would get his PA Band surgery, we'd go home, and then come back when he's 8 mos. old or so to fix his heart defect for good.

A+B=C. C equals "the rest of his life."

Sure, we had a little genetics defect to deal with, but that was "cool." We'd love him no matter what. So what if he develops a little slower than he should. So what if he looks a little different than his brothers or other kids. So what if he might not talk in a conversational manner. Our greatest hope in this Genetic Disorder Mystery would be that he could smile. We just want him to be able to SMILE at us and to know he's loved and to be enjoying life the greatest way that Henry can know.

Today, in talking with the cardiologists, it sank in, in a paused realization, that Henry might very well be in and out of hospitals (and CHOP) for a lot, if not most, of his life.

His heart is presenting a myriad of complications and mysteries. He likes to 'brady.' We all know this by now. The REASON he does is still somewhat of a mystery. The REASON that he likes to pause sometimes (as in, just today, for 5 seconds) is, as well, a mystery. Right now, there is vague talk about giving him a pacemaker. That would be down the road, not something immediately being visited, but the notion has come up a few times in this visit.

Installing a pacemaker is no small thing. It is NOT minor surgery and the chance of infection is greatly increased. Please remember, Henry is TWO MONTHS OLD. His little 8 lb body is only so big. Also remember that Henry has had two G-tube surgeries. The first one did not work with his physiology, so we moved to the G-J tube. Dr. Ravishankar explained to me that if he was to get a pacemaker, the mere PLACEMENT of it within his abdominal cavity would be somewhat challenging. As in, there's already enough 'stuff' going on inside of him.

The reason we are having to stay another 2-4 weeks is due to a sternum infection in his chest from the first heart surgery he had to place the PA Band, on March 4. This is different than the INCISION infection that brought us back almost a month ago. This is an infection in the bone. The strength of the antibiotic needed to fight/kill this infection can only be administered intravenously. Because of the sensitivity and viability of IVs, there is talk of placing a PICC line. A PICC line (thank you picclinenursing.com -->) is, by definition and per its acronym, a peripherally inserted central catheter. It is a long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

We were brought here, this time around, 2 weeks ago, because of Henry's extreme bradys and desaturations. In the meantime, while trying to figure that out, Henry was diagnosed with rhinovirus (aka the common cold). That complicated matters GREATLY, bringing on substantial heart pauses and increasing his reflux issues. IN THE MEANTIME (keeping up?), his blood was cultured positive for a blood infection and he ran a fever which caused him to throw up 5 times. Feeds were disrupted, bradys continued and Henry experienced an overall malais which broke my heart to see. His eyes watered/gooped up, his cough was literally choking him and he just looked sad and sick.

I was given an analogy, a few times now, that might help you understand the situation to a degree. Imagine a house. There are two main parts: the construction and the electrical. Henry's heart is the construction, which can be fixed with surgery down the road. The electrical is the mystifying bradys. The surgery cannot fix the bradys. Ron and i had thought this the case before. Now i get it. The placement of a pacemaker would be a PERMANENT life-long thing. There is no 'growing out' of a pacemaker.

Today - - well, today, it hit me with a great heaviness, a great sadness, that my third little boy will never be well. If its not the genetic disorder, its his heart. His little heart will never function the way a heart should. And that little heart is going to play all sorts of mean games on innocent Henry. We will always have to be on our toes with him. And what 'scares' me the most, especially in OUR household, is how the simplest of common colds can really be a detriment to Henry. Our house always seems to have a runny nose. How am i to know if that runny nose is allergies or rhinovirus?

Well, there it is. Til next time...

Pic du Jour

I hope to see this happening again very soon...

A Lullabye

O Henry
(sung to the tune "Oh Donna" by Ritchie Valens)

Oooo HEH-eh-Nry
Oooo HEN-ry

I've got a booooyy
An' Henry is his name
He likes to braaay-deee
And mystery is his game

But i loooove my boy
And Henry, so does Daaa-aa-deee
(and Sammy and Tommy)

[humm humm hummm]

...... annnddd... HE'S OUT.

Sleep tight, lil guy.

A Letter to Mommy

Sometimes Samson indicates to his ever-perceptive teachers at daycare that he's missing me a little more than usual on some days. Be that, misbehaving, acting withdrawn or sometimes just plain saying "I miss my Mommy." It is in those situations that he's oftentimes asked if he'd like to send Mommy an email and his answer is always an emphatic YES. Here is one of those letters...

Hi Mommy, (Sam wants the words big)
How's Henry doing? Have you changed rooms yet? I have the hick-ups. Today I played in block area. I made a building. Mom, I sewed a teddy bear for "Katie." (Haiti) We made them and they are going in an envelope and then take them to Haiti and they are going to be given to kids who lost their teddy bears. That makes me feel good. I just put sand on my mat. It was from outside and I forgot to get the sand out of my shoes. :-) Hi Mommy. I love you!
-Samson

Video du Jour

Here is Henry Darwin doing nothing particularly noteworthy but everything particularly cute.

O Henry!

T'was only a matter of time before i used THAT as a blog entry title, no?

I walked in this morning to a little toe peekin' out at me!

This morning around 8am, I got a call from Rebecca, Hank's overnight nurse, telling me that around 4am, Henry kicked his G-J tube out of his belly. You read that right. Apparently, he was a little fussy and Rebecca thinks that he was kicking and his tube got caught in his toes and on a downward kick, BLOOP - right out. Balloon and all. And when i say balloon, i mean the balloon inflated with water right behind his abdominal wall, the balloon whose intention it is to KEEP the G-J tube in place, was yanked right through the stoma (aka, tummy opening) as well.

First, let me clear up: Henry is fine. That sort of 'accident' is not life-threatening or perhaps even overly painful, since Rebecca said that he seemed more agitated and uncomfortable with the placement of a rectal Tylenol for pain then the actual dislodging of the tube OUT of his belly. Whatta little bugger! When i arrived at 9:20, he was sleeping soundly and comfortably, so I let him be.

Soon enough, he started stirring, so i took that opportunity to take a look at the damage (and change a diaper). When something like this happens, it is protocol to place a Foley catheter tube (yes, the same kind of catheter you are thinking of) in the stoma to keep it from closing up. It is very much still a fresh sort of wound on Henry, so the likelihood that it WOULD close up within a matter of minutes is quite possible. Tube comes out by accident, catheter goes in on purpose. So sure enough, a blue catheter was sticking out, surrounded by a bunch of gauze, which had gotten damp with escaping stomach fluids.

(Is this too much for some of you? I only share the details because i feel that most of you are empathetic to what we're going through, and truly interested. This is The Nature of Henry, and with it, comes everything he entails. You're living this with me! Up for the ride??)

I called a nurse in to see what they wanted to do. By this time, it was around noon and I was told that IR (Interventional Radiology) wanted to replace his G-J tube around 4pm. I didn't imagine they were too-too concerned with patching/gauzing up this site too extensively since he was going to get fixed up in a few hours. That was partly true - they did want to keep the site dry as best as possible. So two nurses with gloves, and me without, worked around Henry's little belly with tape and gauze and holding the catheter at just the right place so that it wasn't too far in or out. TEAMWORK!

Well, within an hour, he had soaked through that job and was a gurgly, bubbly mess on his tummy. A little puddle of foam was peeking in and out of the gauze. Good Lord. Poor Hank. He was just lookin' around at everyone. At one point, he had a very stern, concerned look on his face. And i said to him, "Don't look at ME that way! YOU'RE the one that got yourself all into this." It's true. He did.

Four o'clock rolled around and i kissed his little head and handed him off to the Team that was to 'put him back together.' In 35 minutes or so, Henry was returned to CICU to spend the night and be observed since he needed some cardiac anesthesia for this procedure.

My friend Katie had arrived by then and the two of us went to Henry's bedside. He was so out of it, very groggy, and proceeded to have a pretty rough coughing fit. His entire head pulsed RED with each cough, like a blinking traffic light. He coughed so hard, the kind of cough that literally takes your breath away and you cannot get it back! I felt so bad for him because i have coughed like this before and its a little scary. You need your air and the cough is not letting you have it. So i sat him very upright in his bed and that seemed to help. They had him all bundled with heated blankets because his temperature was lower than normal.

A cardiac fellow chatted with me and explained that a few of the meds he's on need to be monitored and controlled in the CICU/CCU vs. at home. For one, he's on an IV antibiotic for 14 days (he's only on Day 2, so i'm here a minimum of 12 more days) to treat a blood infection. I asked how he got it and was told that babies who are sick often get blood infections. "Just happens." Also, he's on a drug (I forget the name) that keeps his heart rate at a comfortable level and not as low as Henry often experienced, causing frequent, if not near-consistent, bradys (you've all memorized what that means by now right? Brady=short for bradychardia, or slow heart rate (aka, under 80 bpm for Henry)).

Hank's evening plans were to sleep off the anesthesia and hopefully level off comfortably for all, to be returned to the CCU tomorrow (i was growing quite fond of our solo room right next to the nurses station. I told Henry's nurse Nicole to keep it open for our return.)

Katie and i then ventured to downtown Philly to check out a Moroccan restaurant "Marrakesh." First, we had to RING A DOORBELL! No kidding. A lit button on the outside of a locked door. A nicely dressed woman answered and ushered us inside. The place was quite "cozy," to say the least. Lots of seating along cushy, couched walls with big tin platters on wooden electric spools for tables. And really low lighting. Very much a MOOD going on here. There was seating for about TWELVE and i thought "whoa... this is crazy." But soon we were led upstairs, then upstairs some more to another whole seating area which was just as cozy. Soon Katie and i were sitting in a room that catered to four 'couples.' Four tables. Next to us was a couple in their mid-20s. On the other side a couple maybe 5 yrs older than us. And diagonally... well, diagonally was a particularly 'amorous' couple. Between small bites of the food in front of them, and sips from their glasses, they were all over each other. Now we're not talking FRANTIC GROPING, but slow intense cuddles and giggly whispers. The dude clearly had had a few before even sitting down and the girl was just all smiles. All of us were chuckling and they didn't seem to care. The food was really yummy (spicy and tasty) but the service was a little lacking. Waiters kind of losing track of which of the 7 courses we were each on. And then Katie and i thought it was a little wrong that an automatic 18% gratuity was added to our bill. I've never seen that done with parties smaller than 5 people. But whatever. We had a nice time.

Since I've been told that Henry is staying at Camp CHOP for another 12 days at least, I am planning a visit home next week. Ron's got a few days off in a row and that will be super nice!! To see all my men after 2 weeks - - ahhh...

Still at CHOP-aroni

I keep coming up with nicknames for this place. They aren't too good, i know. If anyone would like to volunteer some, i'll use them in future posts.

Needless to say, Hank and i are still here. The latest 'excitement' now is that he's thrown up his feeds a total of 5 or 6 times! About three times yesterday and three times overnight. I'm not too pleased with this news. I was also told that he ran a fever last night as well. The suspicion is that Henry might have aspirated (aka, took into his lungs) some of his stomach contents during a Niagara Falls episode. This has been the fear since the git-go concerning his severe reflux tendencies. Sigh.

Also, while sitting here typing this entry, Henry has been bradying about twice a minute (i've been sitting here for about 10 min). He dips down to around 50 bpm for about two seconds with a quick 3-5 second recovery. Sean, his nurse for the day, told me that he's been instructed to watch for PAUSES, not so much the bradying. Henry has had no pauses, not since his 9 second, 2-page-flat-line pause of the third day we were here. GOOD news there.

I'm feeling slightly discouraged. I know i shouldn't, but there it is. I was feeling so positive about the G-J tube placement (even took a class on it yesterday). But it seems that all this throwing up and fever and recurrent bradying has started up since then about 2 days ago. Things are supposed to get BETTER, not more alarming. I asked if Henry could just be deemed "reflux throw up guy" and be sent home with the knowledge that we'll just have to prepare for that to happen. It IS POSSIBLE that some kids have reflux so bad it just keeps happening to this degree. Sean didn't think that's the case here. But i will pose this question (perhaps a little more intelligently and tactfully) to the docs/residents. I wanna know what their take on Hank is now.

So in between hanging out with Hank, eating meals at the RMH and simply sitting in my room watching t.v. or reading something, i've had a couple 'excursions.' Y'all know about driving to meet my cousin in OC, MD. Oh so nice. Now, i've got two birthday-prompted redezvous' in order.

Today, any minute now, i'm going to meet Casey, the wife of my dear friend Dan from college. She offered to head down for a road trip and i said to go for it! She is bringing a friend and we'll hang out for a bit, grab some lunch, and there's talk of checking out IKEA, one of my favorite stores in the world (and most of you know that i'm NOT a shopper-gal, so this is noteworthy). The Philly IKEA is the closest one to Corning, so that says a lot about their locations. I've often said that if i won the lottery (THAT whole sittin-around-shootin-the-sh*t conversation piece), that i'd have a good ol time furnishing my house with IKEA goodness. I just like the look and what they're all about.

And then Saturday, my dear local friend Katie is coming with me to Marrakesh, a Moroccan restaurant down it the heart of Philly. And what's kind of fun about us going to THAT restaurant is that the director of Sam's daycare stood and talked with me one day about it being one of her favorite restaurants of all time. She talked so fondly of the food and the experience that i promised her that the next time i ended up in Philly (didn't think it would be so soon after our chat), i would check it out, either with company or solo. I'm glad i'll have Katie with me. She's had Moroccan food and says its so yummy and so fun to go! I'm looking forward to it. I'll be sure to take pics.

It is here that i want to say (AGAIN!!!) that i so very much miss my family, especially Ron. I miss his comfort and love and support and laughter. I miss being able to share my little 'excursions' with him in a special setting void of our oh-so-lovely boys; Ron and i very much cherish having COUPLE time, and these are times that would be perfect for us. There is a certain amount of guilt that i inevitably feel for 'gallavanting' while Henry's in the hospital and Ron is home with Sam and Thom. It's just THERE. It's what i call "Mom-Guilt," something my friend Natalie can say, happily, i don't experience too much. At least not unhealthily. But at the same time, i'm SO HAPPY to be surrounded by friends that care enough to drive 6+ hours to see me and Henry. Friends who live close enough to go with me to a new funky restaurant. I suppose its these very times and friends that 'recharge' me, as Ellie says, and keep me fresh and positive. So to them, i say thank you.

G-J Tube

... waiting, with my favorite "bracelets" on...

It's 11:30 am and Henry's G-J tube placement was not only successful, but indeed, VERY FAST. I had no more than sat down in the Family Resource Center down the hall and up a couple floors before i was getting the phone call that he'd returned! Wonderful. I knew that meant there were no complications.

In fact, less than an hour since placement, they are starting him on feeds! This will be the test. If he tolerates his feeds, that will be VERY good news and indicative of our return home. Because the feeds are going directly into his intestines, and there is not really a 'holding area' in the intestines like there is in your stomach, Henry will be on continuous feeds from now on. Smaller amounts over a longer period of time. The nurses/docs will explain to me how to set his feeds while i am at home. There IS some downtime from feeding, just not sure yet how that will work and when.

Also, we have to be sure that he does not start up the Bradying Fiasco like when we first got here. Those seemed to have chilled out once they took his feeds away (he's been without food, but not without nutrients, for about a six days now). While it is possible for him to continue reflux complications with the food going directly into his intestines, the hope is for it to be lessened, enough to keep bradying and desats at bay.

Henry, snoozin' off the anesthesia

It Was Only a Matter of Time...

The first time i observed Sam watching me administer meds to Henry thru his G-Tube via a small 5ml syringe, i actually HEARD the wheels turning inside his little brain and saw the "A-HA!" moment appear on his face.

"Hey Mom... can i see that when you are done?"

So i gave him one of his own. And for a good 15 minutes, he sucked and shot water out his syringe outside.

Every month, we get a shipment of medical supplies for Henry. Mostly feeding bags (that get replaced daily) as well as notched-out gauze pads to dress Henry's G-Tube site. But what we also get are these GIGANTIC syringes, which I can only guess MIGHT be used if Henry were to start 'gravity feeds,' which means you put the food in a large syringe and literally hang it or tape it to something and let the food dispense at a natural pace, via gravity. At one point, Henry did these kind of feeds, WAY BACK during his first preliminary stay at CHOP. This was before his reflux went haywire, so i don't imagine this technique is going to be used any time soon, if not forever.

So what Sam doesn't know is this: the last batch of these big syringes just went in the garbage can. I cannot be keeping stuff around that i'll never use - all this STUFF can get outta hand if i don't keep it in check. HOWEVER, with the next shipment, and i hadnt thought of it til Sam's brain churn: i'm going to give them to him for 'water guns.' He'll suck way more water in for a longer squirt. I'm hesitant to inform the med supply company of my non-use of these syringes because for whatever reason, if i DO need them again, i'm not sure the red-tape i'll go thru to try and re-add them to the order. I'm leery of these medical suppliers... perhaps unfounded, but still... I think i'll ask for some guidance on this topic while i'm here in Philly this go-round.

Photo du Jour

You can't outwit me, little human!

O Whatta Day!

I am simply in LOVE with my Thomas Magnum!

For all you Hank fans out there, you are going to have to wait a bit for a current blog entry on him. For the moment, it's the weekend here at CHOP and not a whole lot of IMPORTANT THINGS get done or decided on the weekend. For now, Hank's holding his own, which is a 'boring,' WELCOME thing (right, Jefe?). Some good news: he's been taken off the meds that were purposely elevating his heart rate, which held back the bradying for a bit. The nurse tonight said that Henry's only brady'd a couple times today but snaps right out of them. Which is great. I'm happy. She's completely in LOVE with Hank and was downright GIDDY about getting to hold him and rock him and hang out with him 1:1 overnight. That's JUST as good as mommy... if not BETTER, dare i say, cuz Mommy usually SLEEPS in the middle of the night. That is... when she's not waking to go to the ER (mini joke there...)

BUT NO - - THIS BLOG ENTRY is about the crazy fun-filled day not only *I* had, but my charming loveys Sam and Thom had at home in NY. Let's start with ME.

Kathie, my cousin in Maine, noted on her Facebook status on Friday that she was headed to Maryland with her daughter Tia and would miss her hubs and son. I joked that MD was pretty close to Philly, let's meet. The next time i heard from her, she texted me on my phone that she would be in the Philly airport later that afternoon for a three hour layover, too bad we couldn't see each other. I was convinced that we COULD, but before bolting to the airport, i posed the question to the six or so people in the RMH office: "What are the chances that i could hang with my cousin at the airport during her 3 hr layover?" Three heads all nodded emphatically NO followed by "that will be nearly impossible. Ever since 9/11..." Yeah. I got it. I remember fondly the days when you could greet your traveler at the gate with a hug! Those days are no more...

Well this predicament quickly migrated into another text inquiring "Hey... what if you drove to MD to see us and watch Tia compete? It's about a 3 hr drive. If you're up for it." I was a little wishy-washy about making the drive, and of course for leaving Hank, but decided in the end to go for it.

I'm glad i did. I got up at 5:30 and was on the road by 6:10am. I really love when i'm driving in the dark morning and get greeted by the rising sun. Such a cool feeling. I arrived to the Convention Center in the heart of Ocean City, MD by 9:30. Parking was HORRENDOUS. The place was packed. I found a spot in the back of the building. I quickly discovered why so many cars....

Every stinkin' cheerleader in the WORLD was at this competition. Okay - not literally - but there were a LOT of girls at this thing, all in their fancy ponytails and big color-coordinated ribbons and snazzy outfits. And the place was LOUD! Oofah. The music is booming, people cheering FOR the cheerers!!!! I found it all oddly exciting. I do NOT think it's my scene, by any means, but it's definitely something fun to experience. Tia was TOTALLY into it. She looked so cute and GOOD out there, doing her flips and round-offs, when she wasn't the base tossing a girl into the air! I can't help but remember Tia, readily and fondly, when she was just a BABY, a toddler, a little girl... and now, budding into a WOMAN (haha... i crack me up). Love that girl!

We left the convention center around noon to find some eats. We drove around a bit and ended up at a place called Higgins Crab House. It looked good from the outside. All You Can Eat signs... Kathie and i were up for some seafood, being at the BEACH, after all. She got a crab cake and i got fried shrimp. Her crab cake was puny (but GOOD) and my corn-on-the-cob side was most likely a nuked frozen cob. Bummer. And it was kinda pricey, especially for the amount we got. Not HORRIBLE, but not great either. Tia probably lucked out the most, but she was still hungry and was hankerin for some ice cream, so we did just that. How can you not get ice cream, too, while you're at the beach!? Tia actually got a WHOLE OREO in her "Oreo crush" ice cream. CHA-CHING!

From there, we went back to their hotel room so Tia could change, then the three of us went out on the beach! Tia joined her gals and Kathie and i chatted, sitting on one of our wedding tablecloth tie-dyes! It was breezy and cool, but warm in the sun. It was fun to see people out. And of course before leaving, we had to dip our toes in the BONE-CHILLING water. HOOEY! And i saw crazy cheerleader girls in their bikinis IN THE WATER earlier!!!

Crazy cheerleader girls.


So then i called it a day. I had a three hour drive in front of me and wanted to see Hanky-poo a little before turning in. I pulled into CHOP's garage at 7:30 and came up to Hank, bright eyed (AND bushy tailed - ha). I snuggled with him for a while, singing my favorite, James Taylor, and chatted with his night nurse.


Today was one of the best days i've had in a while. It was so nice to drive in the sunshine, eager to see my cousins, and even got to laugh pretty hard with Kathie on the blanket on the beach. I was wondering how Sam and Thom were fairing in Corning today, with our friend Melissa watching them, and i came home and logged on to my computer to **SEE** for myself!

Melissa rounded off my already-awesome day with even AWESOMER (!) photos of the boys (start from the back of this album) from their day together. Melissa's husband Bruce and their son Jordan even came along too! The boys were SUPER LOVED all day. They took them to Sam's favorite place in the WHOLE UNIVERSE (his words!) - THE PARK!!!! I love that my bugger digs being outside so much. Thom's getting a great taste of it too. I can already see them hanging out in the treehouse Ron built! It was a sunny day at home too.

I'm full of love and happiness when i write this post. I have it good. It's as simple as that. Everyone in my world ROCKS. You all really do....

A New FUN widget!

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Our Little Ar-TEEST

It's a picture of "U," Mom!

Thursday Update 5:30pm

Well folks, seems Henry got bored with the CCU nurses and decided to visit the cuties in CICU. Again. He's back to his stompin' grounds from when he was a coupla days old.

Overnight, Hank brady'd often all night. Several significant pauses in his already-lower heart rate. Three and four second pauses. Enough to alert the staff and keep an even closer eye on him. These brady episodes tend to primarily, if not almost exclusively, happen while he is sleeping. Quite rarely is he bradying while awake. In fact, i cannot recall ever seeing it. I do not have monitors at home, but i'm familiar with how he looks when he does it, and i've only ever seen it when he's sleeping.

When i first got there today at 11:30 this morning, he was resting peacefully in his jungle swing, and the monitor did its very distinct BEEPS AND BOOPS when something is happening with Henry that is alarming. Not just a yellow light, per se - a RED light. I was, in fact, typing to Ron on FaceBook about Hank bradying so frequently when a nurse, the resident and the cardiologist on call all came in and told me that he just had a 9 second pause in his heart beat. She showed me the paper - it didn't even fit on one page.

Two pages of flat-line.

That's a little scary to SEE. It's also a little scary to think that he could be doing that at home, off monitors, and i would never know. If i were there to see it happen, i'd shake him a little, and he'd snap out of it, but if i were asleep... well... er... um.

So it was with that pause that it was decided to move him to the Intensive Care Unit down the hall. Closer watching of such bradys, as well as more equipped for dealing with it should it get more serious.

To somewhat reiterate the last post, everyone who's anyone is putting their heads together to decide the best next course of action for Henry. There are several options, which i've mentioned already. Now they have tossed out the possibility (not PROBABILITY - a difference) of placement of a pacemaker. A pacemaker can be set to detect a pause in the heart beat and will automatically "jump start" the heart to continue beating on course. This does not seem to be an immediate solution. It's down the ranks a bit...

Easy-to-Understand diagram of a Nissen procedure

I imagine in the next day or two, we will see one of the following happen (perhaps in this order - let's see if i'm right when it happens...) 1) installing a G-J tube - a feeding tube that bypasses the stomach and goes right into the intestines, 2) a stomach nissen: In this operation, the top of the stomach is wrapped around the lower esophagus in order to create a greater length in the lower esophagus and a smaller diameter. This follows a law of physics called the law of Laplace, which states that a smaller tube is more difficult to distend than a larger tube. <-- i got all that from online, of course, but i think it's easy to understand.

G-J (or Jejunal - aka, into the intestine) tube.
Other notations on the device: Gastric=belly * Bal=Balloon, blown up right behind
the abdominal wall inside, that keeps the 'button' from coming out of his belly.

... oh i don't know. I'm keeping in close communication with everyone involved and i understand completely what they are considering. I trust the crew. I like being in the loop so if I'm not at RMH, i'm at Henry's bedside. I can really tell that he knows i'm there. They had to get another vein today and it was really obvious that my presence mattered, which made me feel good. Henry was looking at me the whole time and ALMOST fell asleep while they were poking and prodding him. Another nurse-y tidbit: just because a vein is found and an IV inserted, doesn't mean the vein can't collapse or start 'failing.' Especially with teeny tiny baby veins like Henry's. If you can get the vein to last a few days, you're doing good. And now the thing with Henry is, a lot of his vein have been "blown," which means they've already been used and have failed and need time to heal, so they cannot be used right now. So when they DO find a vein, its a big to-do.

My lil guy is hanging in there, and he likes to grip my fingers TIGHT! I love looking into his eyes and giving him pep talks. I THINK THEY'RE WORKING.

... More to come...

Silly Sammy

Hey Goober - you can't take your temperature on YOUR FOOT!!
(... or can you?)

Wednesday Update 1pm

Coupla things have been happening/discovered with Henry since my last massive missive (like that one, Dad?)...

On Monday night, Henry finally exhibited all the dangerously low vitals that he showed everyone at Arnot. He brady'd quite frequently and his oxygen saturation levels dipped in conjunction. Now they had something to go by on THIS end. This prompted a myriad of tests (bloodwork, xrays, echos, etc etc).

From then til now, Henry has had a milk test (to evaluate his reflux severity) and relatedly, is going through a more specific reflux test to see how high UP it goes into his esophagus. It is like an NG tube that is directed thru his mouth into his stomach, but it has little electronic 'notches' on it, all the way up. Every time he refluxes (which is just about constant), the tube will record where the reflux landed. BTW, for those of us learning right along with me: Henry does not need food in his belly to reflux. He has been off feeds for over a day (poor guy) and if there is a severe reflux issue, it will happen with or without food/fluids in his stomach.

Right now, they are trying to determine HOW to treat the reflux, which has definitely made itself quite present. There are a number of solutions, they are trying to figure out the best one. Some that i have heard: 1) inserting a "G-J" tube. This will feed him directly into his small intestine, bypassing the stomach completely, thus eliminating reflux all together. 2) surgically creating a 'nissin,' or a 'twisting' of the stomach around itself (using stomach muscles) to create a 'cinch' or closing off of the stomach back up into the esophagus. This is a more complicated surgery and would require them going back in to create it. 3) increasing or adding other reflux drugs. Right now, however, it seems that one of those types of drugs tends to bring his oxygen levels down, which is counter-productive to THE OTHER CONCERNS they are having with Henry, the desats and bradys.

Which is a whole other ballpark - - sorta. The two (three) can be related or not. Think of branches of a tree (that's at least what i am doing). They're all in the same tree, but sometime a branch may never lead to the other one.

Dr. Ravishankar mentioned to me yesterday that his hemoglobin level was low. He is at 10 and they like to see it around 13. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. If it carries oxygen, and Hank's oxygen levels are low, makes sense to boost them a little with some extra blood. This was decided to actually happen at 11pm last night, a phone call to my cell in the RMH room, that i had to consent to. I also discovered in this phone call that Henry has my blood type too: B+.

They also discovered that Henry has rhinovirus. AKA - - the common cold! This might be contributing to his cough (perhaps also reflux-related) and the "runny nose" that he's got. His eye is also getting goopy again. Poor little guy - - he seems a MESS in bed. Coughing, groggy, tubes and wires and he's hungry! I think he's figured out no one's gonna feed him so he's resorted to sleeping vs. energy-wasting crying. Smart kid.

It's hard for me to hold him because of all the tests they are doing, monitors attached to his body that are counting things and recording THINGS. Not to mention, when he is sleeping soundly and quietly with little congestion and coughing and ANY noises for that matter, i like to leave him alone. Letting my little mouse sleep.

To add a personal element to this post: I MISS MY FAMILY AND HOME SOOOOO MUCH this time around. I'm cool, don't get me wrong, but i guess, before, i was just coming and going to CHOP and not focusing too much on the fact that i wasn't at home. But now, i know how good it feels to be there, with Ron, and Sam and Thom's antics, and little Hank in his 'spots' (living room p-n-p, bouncy seat, swing, bedroom p-n-p) and i want to be there so bad. I spend most of my days at Henry's bedside, holding him, or not, watching numbers beep and boop, and i miss everything away from here. I find such power and comfort from my husband Ron being my rock. He knows how to hold me JUST RIGHT when i have an emotional tear-filled breakdown (they DO happen folks, believe me) or 10 minutes after i scream my fool head off at him for not putting laundry in the dryer (even though i've made it quite clear to EVERYONE that laundry is MOM'S THING, don't touch!). This paragraph is all about MY BOYS. Sam is being so much more astute to his surroundings and goings-on. This trip, for the first time, he started crying and said "Mommy... i don't WANT you to go to Philly!" He's now AWARE that going to Philly means i'm gone for a while. What a total bummer.

To conclude, thank you so much to everyone who's received a txt msg, a FB msg or a phone call asking for help watching Sam and Thom while Ron continues, to his best ability, to go to work without me being around. I'm so grateful for just being able to ASK. If you can help, you can, and if not, that's cool. But i'll never hesitate to ask. I, myself, anticipated returning to work this week, but Henry had other plans i suppose. A thank you to Wegmans, as usual, for being understanding of this.

Sigh. Ho hum. Dum dee doo... More to come, of course...

Brady Bunch

Check out Hank's beautiful long eyelashes - and growing!...

Well, we're back at being somewhere other than HOME a little too soon for my taste. What's kind of funny about that comment coming from me is that when I was here that first month of Henry's life, i remember being very leery about coming home. I liked and appreciated the comforts (so to speak) of the hospital. The reassurance that Henry had a nurse to his beck and call, quite literally, was a nice thing. I would get asked "aren't you eager to go home?" and i knew i was SUPPOSED to say "oh yes, very!" I mean sure, i missed the gang, but i was uneasy about taking on Henry sans nurses and with no monitors.

But i digress. Let's backtrack through to now. BTW, this is another long read, so go getcher self a glass/mug of your favorite beverage first (i'd quite enjoy an ice cold Shock Top, but the most i'm gonna get sitting here next to Henry's bedside while he's off to a milk test, is a ginger ale on ice! Ho hum.)

Sometime last week i was running around trying to sync up all our CHOP appointments to happen in at least the same week, if not for the same day. At this point, it was my understanding that we would have to be here twice in one week: at the beginning for his infected incision site inspection and at the end for a meeting with plastics to talk about the game plan for fixing Henry's lip. After being led from one person to the next, I ended up talking with the plastics division directly to set up a time and date. 10 minutes later they called me back to say they had discovered we have NY Medicaid (or "MA" (medical assistance)) and could not accept it. She was minorly apologetic. I sat there for a good 7 seconds with no sound or words to form. I truly was in shock. I actually made her clarify the news by saying it again, which she did apathetically. Well okay then. That's one appointment i don't have to stress about adjusting Ron's schedule and finding a sitter for the boys. As for the incision appointment - with a simple phone call, found out it is NOT necessary we return to Hank's surgeon for inspection - a simple check by Dr. Finnerty, his local cardiologist would do. Um, yeah, that saved us a 10+ HOUR drive...

Left: Dorene, an awesome volunteer who i chatted with extensively when i came in this a.m.
Right: a knee's-eye view of Henry and Mommy.

I then surfed the net for the Pediatric Cleft and Craniofacial Center in Rochester, NY, in conjunction with Golisano's Children's Hospital at Strong. I got their phone number and left a message. I was called back Thursday and chatted extensively with the nurse practitioner Christine and we had an appointment the following day, Good Friday, at their office. Ron had a big group of days off (some because we had planned for him to come to CHOP or to watch the boys at home if i went) and we we decided to "make a day of it" with the whole family. I also called my college roomie Kerry in Geneva to see if she had the day off and did she wanna get together, the whole gang. And she did! Sorry to all who might have loved seeing pics of all four boys (minus Henry) boys playing in a small sandbox shaped like a tugboat - we forgot the camera! Phooey.

The appointment went very well. I like Christine - she is forward, outgoing and most of all honest and direct. KINDA LIKE ME! She was totally cool holding Henry and impressed with his sucking ability given his situation. She was also excited at the small progress we made during a feed with a bottle. Henry was definitely working at the nipple and getting some dribbles. Then he just started fussing and not working at it, and so the consensus was to start bottle feeding for about 10 minutes right before a feeding. When he starts fussing or it starts taxing him, just finish the feed via G-Tube. Sounded good to me. She also evaluated the severity of his nose "nubbin" and the course of action to help bring it closer to his face before surgery. You can use a taping method or a retainer method. It was not decided yet which route to go. Christine should be in touch with me shortly.

Notice Henry's scalp IV. I had no idea the head was a GREAT place to find a baby vein.

Later that night, actually Saturday morning around 12:30, i was awoken by Henry refluxing his overnight feed. We give it to him in 2 portions, due to the time it takes to feed him; it's a 10-hr feed using formula, which should only be out at room temp for 4 hours max. After he settled down a bit and i wiped him up, he looked so groggy and seemed to be falling back asleep quickly so i changed his diaper quick and put him back "down." And by down, these days, it means inclined at about a 25-30 degree angle due to his reflux inclinations. Reflux is common with cardiac issues, especially cardiac babies. He's on Zantac to help ease this discomfort.

In laying back down myself, i was listening to Henry and felt uncomfortable with his breathing pattern. It was not only gurgly, as though there was still formula stuck in his throat, but it was SHORT, and then he sounded like he stopped breathing for about 10-12 seconds. If you're familiar with sleep apnea, its a similar sound. Breathing - pause - not breathing. Apnea can also be a fairly common thing with cardiac babies but Henry had done an apnea test without a noteworthy outcome. Nonetheless, he had developed a very steady pattern: gurgly labored breathing for 40-50 seconds, and no breathing for the rest of the minute. The breathing would come back with a gaspy coughy breath, a mini cry, then back to the gurgly breathing. I laid there disconcerted with how it all sounded and called the overnight number to my ped's office. The operator paged a nurse on call. Her return call was taking too long so i thought to call CHOP and spoke with the cardiologist on call there. The doctor, Camila, remembered Henry quite well and gave me some valuable direction: to monitor the breathing and check his color. If he was dusky/grey and the lack of breathing continued, she suggested i go to the ER.

Which is what i did. I picked him up to get him packed and he threw up again. This time, he looked so grey/white and kind of spacy, his eyes bugged wide open. Ron and i both thought it looked visibly bad. I chose to drive him myself to Arnot. Ron called the ER to let them know i was en route.

When i got there, the front desk nurse sat me down to get some general info, all while putting a pulse-oxygen monitor on Henry's toe, a common practice. Once the machine fired up after a series of beeps and boops (i like that phrase), his number came up 50. In hanging out at CHOP for a month and being inquisitive, i've grown quite familiar and knowledgable of all the numbers, what they mean, and what's appropriate for HENRY. 50 was not good. I looked at the nurse and as i was saying "is that right?" he was picking up Henry's carseat and abrubtly said "walk with me." He notified several people he walked into on his way to a room and by the time he sat Henry down on the bed, there were 7 people in the room.

Henry was put on oxygen immediately and his number QUICKLY and immediately came up - 60 - 67 - 76 - 83 - 91 - 96. Technically, 96 is HIGH for Henry; Henry breathes comfortably and safely on his own, with plain ol room air, at about 86-90. No matter though - he was getting some good air and his color literally rolled back up and only his face. Poor little guy was starved of oxygen. I was gently reprimanded for driving instead of calling 911 and getting in an ambulance (it never really occurred to me that he might need LIFE-SAVING equipment en route!). I was also told that we could have lost him if i gone back to bed and let things remain as they were. Well, i guess you can chalk the WHOLE event up to Mother's intuition/instinct. I mean - why did i wake up to his throwing up in the first place? Then of course after tracking his questionable breathing pattern and calling CHOP, i made the right choice to go in. It felt SO GOOD to get a cardiologist in REAL TIME on the phone to guide me, even if all the way from Philly (little foreshadowing here...)

Open............................ Closed

Two hours later, Henry was taken up to the pediatric unit on the 4th floor. I learned two things that night. 1) Henry, and babies/children in general, will only be in the NICU while still in the hospital after birth. Once the baby/child is discharged, it can never return to NICU. I do not know if this is a general NICU rule or Arnot's rule. I'm guessing the former. 2) Arnot does not have a PICU (pediatric intensive care unit). I thought they did. This too is a mini foreshadowing on why we are back at CHOP.

Henry remained in the ped wing for a day and a half. All day Saturday they basically monitored him. Took him off feeds and replaced with IV fluids. He was bradying (lower than average heartrate, which for Henry, is anything lower than 90-100) at beats from 88, 78, 58... off and on all day. His oxygen levels never baselined (and again, for Henry, are 85 to low 90s) and remained around 60 and 70 if he only breathed on room air, thus he was kept on an oxygen flow blown in the direction of his mouth. That kept it at a comfortable level. I went home that evening to have dinner with the family and take a shower.

Easter Sunday morning after midnight, the nurse and i were noticing Henry's bradys happening VERY frequently, sometimes 3 in a minute, going down to 50 BPM, and then recovering slowly. Whenever this stuff happens, Henry seems very peaceful and almost always sleeping. If you look closely, you will listen and not hear him breathing. If you are particularly observant, you can look in his mouth and most likely (but not always) notice his tongue all the way pushed back into his throat, quite literally closing off his breath. That's when you shake him awake and he'll gasp, set off a little cry, and then go back to breathing. This just KEPT happening. Paired with some other concerns, the nurse called Henry's pediatrician who came in, showed concern and called Dr. Finnerty, Henry's cardiologist. I figured worries must be important enough to call The Crew in at 3am. An echocardiogram was ordered and i sat and watched Dr. Finnerty point out the parts of the heart, even the PA Band that was put in on 2/17 to limit the bloodflow into his heart. Dr. Finnerty did not find anything different or concerning on the echo, so that only added to the mystery. Henry's bradying and low oxygen are going unexplained. He's been tested for RSV, flu and pneumonia, all negative. There is the question of reflux - why is it happening so frequently, what is causing it.

Daydreaming of calmer days....

So Dr. Finnerty and Hank's pediatrician Dr. Ruas both agreed, along with some calls to CHOP, that Henry needed to be transported back to his "old stompin' grounds." There were three options: 1) airlift, 2) ground transport coming from Elmira or 3) ground transport coming from Philly, preferable in that order. It didn't seem like option #1 was happening fast enough, and #3 is just dumb when #2 can happen. And so #2 did and Henry was packed up in his "pod" around 8:00am.

Meanwhile, i went home and broke the news to Ron. I think he was completely surprised, given the look on his face. I thought about a lot of stuff on the 25 min ride home and decided that i would go home and take some time to pack and spend quality time with the family. No need to RUSH behind the ambulance when Henry was going to arrive in comfort and care. It was Easter after all and we originally had plans to have dinner with my dad (Shirley's in FL). We changed the plans to Easter Breakfast (enjoyed at Spencer's, YUM) and Sam and i had yet to dye eggs with the kit we bought about a week ago. So i promised to do that with him after breakfast. I was able to pack slowly with thought (more than TWO outfits, thank you very much) and all four of us dyed eggs (well, Thom watched joyfully from his porch swing). It was really a nice morning. The perfect way to preclude a potentially long time away from home.

And now here i am. It's taken all day, off and on, to write this entry, and in the course of time, not a whole lot has been discovered. In fact, Henry is apparently only here to bat his long reddish eyelashes at all the pretty ladies, because he has yet to truly exhibit ALL the concerns that prompted our coming down here in the first place! He's only brady'd about three times total in 30 hours, and they've all recovered within 3 seconds. He's not refluxed at all and his oxygen saturation levels are good for him, not necessitating supplemental oxygen. The only indication that this whole trip is not a joke is this tiny cough that is still a mystery as well. There's speculation that it is related to reflux. At this point, i have no idea what they are going to do to even FIGURE OUT what's wrong, especially if there are no symptoms to show them!

So we'll see what tomorrow brings. And tomorrow's tomorrow. Beyond that, i'm not counting days. I'm just goin' with Henry's flow...