Saturday, June 19, 2010

The Five of Us

We are home.

And even though Henry had been home a cumulative 3 weeks before this return (2 weeks and 1 week), it never felt as meaningful and "solid" as this return does. And so i feel we are celebrating, in a way. Today, we spent the whole day "out and about" and it felt SO VERY NICE.

We started the morning by getting all of us put together and in the car by 9:15 and we headed to my Dad's Community Rummage Sale. The morning got hot FAST, in that sun, but we put Henry and Thom in the double stroller (a Godsend!) and Sam chose to ride his bike with Pop-Pop riding next to him. And we walked around, going from house to house, looking at the stuff for sale. Ron went to work, and Thom and Henry napped while I tried to get Sam to do the same. I believe Sam is growing out of his nap time. Sniffle. It was good while it lasted!

After the boys woke up, I got them all situated and packed up, sippies and snacks in hand, and went to a local park next to a pond. Sam and Thom played on the playground for about 45 min (Hank snoozed) and then the four of us walked around the pond, making observations and singing songs. And can i just say again - IT WAS HOT! Oofah. Really muggy, too. I was literally dripping sweat onto Sam's lap as i buckled him into his seat to go home ("MOOooOOoommm!").

The evening concluded with a light supper, lots of cold water to drink and fans blowing, and a sudsy red-colored bathtime. I LOVE MY KIDS right outta the bath, smelling fresh and clean, no longer sticky and stinky.

Henry is being monitored via a heart telemetry kit that was initiated the last time we got home (the time we were home for mere HOURS, a month ago). This time, i'm pretty sure it will last the full 30 days AT HOME. His heart is monitored remotely. My only job is to change the wires to his chest daily, change the monitor's battery (AA) every 3-ish days and charge the transmitter every night.

Let me conclude this post with the clear thought that LIFE IS GOOD. Henry looks great and has been actually LAUGHING along with smiling; my heart jumps for joy with his gravely giggle. Sam simply ADORES Henry and says as much: "Mom... I really love Henry... i REALLY DO, FOR REAL!" Thom was playing with Hank's toes in the double stroller, facing each other, which was cute to see. The boys will finally get to know one another as brothers, all together. And I'm learning how to be Mom to all three at the same time. It's been four months coming, but i'm definitely up for this challenge, and it is certainly a challenge at times. But it mostly just plain rocks.

Saturday, June 12, 2010

Sam's Daycare Class Farewell

While the summer is still ahead for Sam's class, they had their "Farewell Graduation Party" this past Friday. These kids (I think all of them) will be going forward into Kindergarten in the fall! I believe Sam is the youngest, or at least he was for quite some time. This photo was in the weekly newsletter that his teachers put together and i just love it. I'm going to add this picture to Sam's 'stash' of Stuff to Keep.

Monday, June 07, 2010


Henry is OUTTA the hospital! In fact, as i type this, he is snuggled warmly in one of the Ronald McDonald House's pack-n-play next to me. Yes, I'm not quite HOME yet, but this'll do nicely until next week; I have an outpatient follow-up appointment next Thursday with Hank's primary cardiologist here in Philly. Hopefully she'll give us two thumbs up and we'll be able to drive home!

I'm feeling very good and positive about THIS discharge. Comparatively, I think i've always felt a slight unease when we'd get home before, always thinking "when" will we end up back at CHOP instead of "if." But not this time. I mean, i cannot predict the future, but I'm gauging how i feel based on how Henry LOOKS, and a dash of Mom Instinct. Henry looks GOOD. Happy, content and comfortable. I truly believe this nissen surgery is exactly what he needed to begin a nice quality of life for himself, aside from his heart complication, which will need fixing in a few months (let's not talk about that now...).

So for a week, Henry and i will hang out in and around the Ronald McDonald house. Maybe we'll venture out for a few walks around town (there's a consignment shop 5 blocks down and 2 over i've been wanting to check out). Tonight, I spent 2 or so hours 'organizing' things in the room. Henry is on several medications, so i spent some time pre-loading little syringes to the correct dosage. I also prepared formula for his overnight continuous feed (in 2 parts) as well as for tomorrow. I laid all his STUFF out and around, ready at my fingertips. I created a grid with times and meds so i know when to do everything (I no longer trust my mind to memorize everything, even though it still does a pretty good job).

Before today, i was able to go home for two and a half days! I surprised the entire family (Thank you, Shirley, for keeping a secret) and when i walked in the door around 9pm Tuesday evening, the look on all The Guys' faces was priceless, especially Ron's. Sam smiled and said "Mommy!" and Thom yelled and then giggled, all while walking over to me with his arms in the air! It felt SO TOTALLY AWESOME to be greeted with such genuine love and warmth. Ron happened to have Wednesday and Thursday off, and it would be an understatement to say that we had an amazing time together. We managed to get in a 1:1 lunch at Woodhouse together as well as an hour of playing TENNIS! That was probably the most fun. We are very equal to one another, which made it even more fun and challenging. Ron's good at getting me with the short shots and I aced him a couple times with my signature serve. Good stuff.

Sam was so very attuned to my being home and precisely HOW MUCH time he had with his Mommy. I kept reminding him that i would be back home within a week, but that didn't stop him from trying to [lovingly] monopolize my time, which i happily obliged, especially today, when i was trying to get on the road at a decent time. When i woke up around 7:45, i was thinking i would aim for 10am. That easily turned into 12, and in the end, that worked out fine. Sam was trying to squeeze EVERYTHING big into Stuff To Do with me, including tennis lessons (the rackets and balls were still out), reading books (a lot of them), sidewalk chalk drawings and playing fetch with Beegsley (who still stinks a bit like he flirted with a skunk - ugh), among other little things.

All the members of my immediate family, in these past three days (including Dad ("Pop-Pop") and Shirley ("Nanny")), have really highlighted what it means to be HAPPY, especially my husband Ronald, who I think truly loves me unconditionally. He makes it all just plain EASY. :-)

And He.. Was... RUNNIN'!!!

Well, folks, Henry has been here 25 days (a month's time ZOOMS in our world) and today he just looked GREAT!!! I stripped him down naked to give him a bath, and when i say naked, i mean NOTHIN' except his G-Tube button on his belly! I scrubbed him down good, got all the various sticky residues off his various limbs, redressed his belly incision and put a little split-gauze around his G-Tube site and then I bundled him up and quite literally twirled around with him in the open space of the room just because I COULD!

Then i took him in the room's private bathroom to show him himself in the mirror, like we've done with all our kids at bath time (goofy tradition). We say, "Who's that baby in the mirror?? That's YOUUU!!!!" and then point and make a gigantic to-do over it. Henry just smooshed his face up to say, "Eh... who cares.. I'm gettin' cold, woman." When i laid him down on the bed to pick out his next onesie (went with the silver electric guitar that Auntie Natalie got Sam, which all the boys have worn, Henry the longest because he's staying the smallest longer!), his entire body was kickin' and flailin' like he was running a marathon while laying on his back! It was the cutest, BEST thing i've seen from him since I returned to CHOP. I got in real close and said, "Are you runnin' a marathon, buddy?" and then guess what he did?.......

...... HE SMILED THE BIGGEST SMILE!!! - - as if to say "Yup, Mom... i AM runnin'... and I'm not gonna stop til we get the !@#$% outta here!" I started giggling as i got more and more smiles! Finally! The day i've been waiting for (again) since my return. You know Henry is feeling better when he smiles; it's just obvious.

When i asked the nurses about Henry's IV finally coming off his foot (he's been done with his IV antibiotics for over a day now), they said, "Oh... Henry did that!" Apparently his feet helped kick the board that's taped to his foot to make it stay in position. It didn't sound like he kicked the actual IV out, but he "helped" them get the show on the road about that. Smart cookie!!!

Henry's nissen incision is no longer as red and swollen and is not even really seeping any more. It's pink, and there are two spots that are draining a little, but nothing alarming or looking infected. And his G-Tube site is not leaking as much, which means it's closing up more and healing around the tube. We've been rubbing Desitin around that area to promote healing (just like a diaper rash) and that seems to be working well. He is finally back up to full feeds (it's taken WEEKS) and they are upping his calories slowly through today and tomorrow. By Wednesday/Thursday-ish, we are going to try and get him back on bolus feeds. A bolus feed (do you remember?...) means that he gets fed a certain amount in one sitting vs. a continuous pump of feed spread over the course of the entire day. We're hoping to go back to every three hours and then the continuous overnight feed, which works great for all of us, as well as Hank's nissen.

Henry's chest incision is even starting to fade, as anticipated. That surgery was 3 months ago. Wow.

So today is a GOOD DAY! I hope to report nothing but the same in posts to come!

Thursday, June 03, 2010

Thursday Update 7:30pm

"Hey, how's Henry Doing?"

That's the Million Dollar Question. Or maybe even 2 million...

I see you, peeking over Lil' Eric!

The short answer: Henry is doing well. "Better" might be more accurate. Henry's abdominal region is healing gradually and he is visibly in less pain daily. I am able to cradle him and rock him and sit him upright for PT (physical therapy) work. I'm able to clean his little nose-nubbin with minimal fuss and he's been looking more and more bright, alert and happy. Content. Comfortable.

It's very obvious when Henry is not feeling well. He LOOKS miserable. His eyes get glossy and pink and don't open all the way. His skin tone is sallow and splotchy. He looked pretty rough and worn-out on Monday and Tuesday. Pain meds helped him greatly get over the discomfort hump and I'd like to think lots of Mommy hugs and lovin' helped, too.

The longer answer: Henry's mid-section, his torso, is pretty beat up. I've used the word "battlefield" a few times. He's got the heart chest incision that is a pink scar. Directly below that is his new nissen incision, which ends immediately above his belly button. This incision is very red, sore and oozing in two spots, which everyone who's anyone is keeping an eye on, especially ME! They are keeping that covered with dry gauze and I imagine at some point will try to let it air dry. He is on preventative antibiotics right now via IV which I hope will kill whatever is thinking about hunkering down in that open, fresh wound.

His GJ-tube has been coverted BACK to a regular G-tube, since he got his nissen surgery. Because the nissen prevents reflux, it would be redundant to keep his feeds via the J (or jejunal) tube. Now, all his meds and feeds go right into his stomach and KNOCK WOOD (no... seriously.. find some wood and knock on it... i'll wait...) - - he should not reflux anything anymore. It IS possible to do so with a nissen, though very rare. It is also possible that he could arch his back with reflux discomfort, or even wretch as though attempting to reflux, but I have seen neither of these actions from Henry. The only 'bummer' about the G-tube site is that it is leaky. The stoma (or "hole") is not taut and snug around the tube, so the tube is able to move too much and some feed leaks out. The game plan might be to stop all feed to allow it time to DRY and heal (which can't happen if it's always wet!). You might be wondering how he would get nutrition. Well, when situations arise where feeding cannot be done traditionally (or in Henry's case, via his G-tube into his belly), an IV fluid called TPN (total parenteral nutrition) is used. Henry would receive nutritional formulas containing salts, glucose, amino acids, lipids and added vitamins. It's not ideal, of course, but it could help in the long run if it allows the G-tube site time to HEAL and be snug! This has only been tossed out as an option. We'll have to see how things go over the next few days. The key is to get Henry to gain weight, and that can't effectively happen if his formula is leaking out! For inquiring minds, Henry weighs about 11 lbs. now. He is a little over 4 months old!

So I think, this visit, the idea is to let time work its magic. Henry needs time to HEAL. His heart issues have been fine - very little bradying, no pauses and a steady heart rate. But this is how Henry is when he is WELL. I am watching him with my eagle eye, and if i see him starting to act differently or sluggish, i'll be waving a flag. I do not want my bugger getting sick on top of all that he is here for. NOTHING ADDITIONAL!!! Nothing NEW. Let's get his belly healed up and let's be on our way...

Thank you all, for your thoughts and prayers. Henry says Thank You too!