Monday, September 27, 2010

Healing Progression

I think it's amazing to watch Hank's lip heal right before our eyes, so quickly, in the span of a few WEEKS. I can only imagine what months and YEARS will provide. I'm so very happy with how it has come along and how totally easy-going my lil guy has been through it all, especially having his arms out in a Frankenstein manner for two straight weeks. Well, his arms are "back" and it was all worth it. Yum yum, those fingers never tasted so good - and excellent timing, too... those teethers are trying their darndest to come in!

Left: One week mark. Right: Two week mark.

Hank had his 2 wk check-up appointment and Dr. Girotto and Christine thought he looked great. The "plan" is this: We'll get through the holidays with no further surgeries. At the beginning of the year, Dr. Girotto will fix Hank's cleft palate in one surgery. About a month or two after that, he'll do a more refined lip surgery to make Hank's lip even prettier! In late October of this year, however, we have an appointment with one of Strong's ENT doctors to discuss Hank's upcoming palate surgery and the placement of tubes in his ears on surgery day (routine procedure with palate repair). That same day we'll have one more consult with Dr. Girotto before scheduling The Big Day (#2!) in January.

And then, i believe, as far as any of us can foresee - - this should be IT for a long time (hopefully). There's no telling at all when Henry will be ready to have his heart ultimately repaired, but with any luck, it's not until he's well healed from all the facial repair. I'm confident that will be the case - he's been doing so well at home on his own. No monitors, telemetry, no NOTHIN'. And i'm loving it.

Hank will be 8 months old tomorrow and he's doing all sorts of stuff that he SHOULD be at this age, if perhaps a touch delayed by a couple months. He's tracking visually, kicking like crazy, laughing, cooing and saying short consonant-vowel combos and has even played Peek-a-Boo with Ron and I, a big PLUS developmentally. We've been given the go ahead to start sitting Hank up in a Bumbo, with assistance of course. I cannot wait to see him hold his own more and more.

Today, almost three weeks.

Thursday, September 23, 2010

Autumnal Equinox 2010

We celebrated this year's autumnal equinox at the Unitarian Universalist's Fellowship in Big Flats, the newest addition to our lives and well-being. Ron and I (and the boys!) have enjoyed getting to know this group of very cool and open individuals, who are totally accepting of EVERYONE. In the summer, service is incredibly laid back, which can mean that members lead discussions on, say, the creativity and meaning behind Kurt Vonnegut, which is exactly what Ron did one Sunday. It was very well received! Sam and Thom have little buddies in their age range and everyone's been so interested in Hank's care.

Ron has always been into the seasonal equinoxes and solstices, and suggested to the group that we all meet for a large bonfire, replete with munchies, s'mores makings, guitars and camp chairs. He headed over earlier in the day to gather and organize firewood and by 7, a bunch of folks appeared, making for a GREAT turn-out! There were several kids running around, getting sweaty (Sam took the cake, for sure!), roasting marshmallows and enjoying homemade ice cream. There was some great guitar-picking by one member named Dan. Indeed, there was a large harvest moon in the sky, glowing a golden sepia over our festivities. Ron and I chose to leave Hank and Thom in the awesome care of our dear friend Natalie while we enjoyed a mini "date night," what, with Sam totally preoccupied with his buddies at the fire. It was an incredibly enjoyable night with our new friends.

Tuesday, September 21, 2010

Sammy Soccer, Second Season

[Now THAT'S a primo example of alliteration, Sam.]

Unlike Sam's first attempt at soccer, I have a good feeling already about this year's voyage. The kids are broken into much smaller groups with an individual coach, and those coaches seem to be directed by one lead, older coach with a whistle. Each group has a few minutes to practice various drills and techniques, the whistle is blown, and the groups rotate to the next coach and drill. The whole thing started with a couple laps around the field, which Sam LOVED - he led the group. His focus also seems much better, a big difference between not yet being four years old (then) and almost five (now). He's got practice every week for 6 wks right after school, but before Thom is picked up from daycare, which works out perfect! It's also being held at a park where there is an awesome playground and a gigantic old root-y tree providing shade on those [hot?] sunny days. Sam's already got two or three buddies from his Kindergarten class playing alongside him, and Henry quite enjoys chillin' and watching from the sidelines.

Saturday, September 18, 2010

Eastern Boxelder Bugs

Here's what the corner of our porch has looked like for the past coupla weeks. I've since researched and found what these bugs are, contrary to my open inquiry in the video. They are Eastern Boxelder bugs. They have quite overstayed their "welcome" in my book, but Ron thinks they're cool. This snippet is from an article online:

In the fall we will see the adults swarming enmass on the sunny sides of buildings. In particular they prefer white or light colored surfaces and a southern exposure. You will also see them clustering around the lower portion of tree trunks. At this time they are looking for hiding places to overwinter in and they will get into your house if they can.

For the record, they are essentially harmless. I was afraid they might have a termite destructive quality to them, and they do not.

Monday, September 13, 2010

Hank's 1st Lip Surgery

Well, I'm embarrassingly overdue for this entry, but as the old addage goes: "Better late than never." It's definitely worth documenting. This was, and is, a big deal.

As most of you know, Henry had his first preliminary cleft lip surgery, or lip adhesion, last Wednesday, Sept. 8. And, also, as many of you are on Facebook, you've seen the full set of photos as well. I actually hesitated posting them first, before this blog entry, because I enjoy putting photos and stories together so much on here... but i did post them, because I also knew how much everyone who loves us and Henry was eager to see the outcome.

Last Tuesday evening, I headed up to Rochester to spend the night at their Ronald McDonald House, as Hank's surgery was first thing the following morning; I had to be at the hospital at 6:15! I didn't sleep very well, and I'm stubborn enough to chalk it up to the memory foam bed that I'm not used to. Well - okay - sure, there was a decent amount of anxiety over my little man's entire face changing to me. The RMH is less than a mile behind Strong Memorial Hospital and it's very nice. It's got a different feel than the larger Philly RMH, that i got SO VERY USED TO. It only has 20 or so rooms, and the house is much smaller as a result. The eating area is more spread out and there are no t.v.s in the rooms. It has all the coziness that RMH is known for, though, and that was quite comforting.

Henry was to have no food or drink (via G-Tube, of course) for 6 hours before surgery. Because he sleeps like a champ for 12 straight hours, that was not a problem. Soon after checking in at 6am in the office, which is very colorful and kid-friendly and cozy, we were taken to the little pre-op 'cubbies.' Hank was weighed and changed into a cute little jungle-themed scrub. He was wide awake, but totally quiet, just taking in his surroundings. Soon i was greeted and spoken to by the anesthesia team, some nurses, and Henry's eye surgeon, Dr. Siebold, who performed his glaucome repair just a week before. She was there to check his eye and it's pressure as he was first put under, but before his lip surgery began. She later told me that everything looked great and he no longer needed dilation drops or any further meds. Woo hoo!

Dr. Girotto greeted me last, before Hank's big event, to go over some things, make sure we were both on the same page, and to see if i had any last minute questions. He is an amazing doctor with a very comforting bedside manner. I've heard nothing but awesome testimonials of his work - and SEEN the results, at that Cleft Picnic i went to. I really like him. I totally trusted giving Hank to him; as he was taken in the nurse's arms, he was looking up and back at me, and i remember specifically looking at him and his nubbin and thinking "that's the last time i see it."

A mere two hours later, Dr. Girotto came out to me in the waiting room. I looked up at the clock and back at him as he said with a smile, "Pretty good, huh? I am really pleased with how it all came out. We did NOT have to 'break' his septum, so that's good news." And that was REALLY good news. There are pros and cons to that, some complications can arise later in the development of Hank's mouth (and specifically teeth growth) by doing that. But he was able to bring the lips together to the nubbin successfully. He said to give the team another 20 or so minutes and one of the nurses would be out to get me.

My first viewing and holding of Hank, post-op

In those 20 minutes, i kept thinking about how i would react. I knew it would be a bit of a shock - but i did not expect to react like i did. I'm usually a pretty cool cucumber, and have been, through all of Hank's CHOP visits and procedures. But when i came around the corner and the nurse Dawn was holding him, i looked at him and could feel the tears welling. And then out of nowhere, i was unable to breathe with my sobbing. My little Bubs was completely changed. And he looked SO different and SO swollen and all crusty with blood. And groggy. But he needed some Mama luvvins, and i couldn't wait to hold him.

Soon, post-op, Henry started getting his feeds again, and with the sheer exhaustion of not eating and surgery loopiness, he was out cold. To my great happiness, Julie, who i met at the cleft picnic, came to see Hank and I that afternoon. She was VERY excited to see Henry immediately following his surgery, and even brought us a little bag of gifties (including chocolate for me! - WOOHOO!). The two of us took about an hour to enjoy lunch together and get to know one another a little more in the hospital cafeteria. We got to laughing about stuff our kids do and say, and it was a nice little diversion from the tension and anxiety of the morning.

I spent a good portion of the evening and into the night with him, rocking him and making sure the crew was on top of the morphine doses (heck yeah!). He soon got drowsy at his usual 9 o'clock and by 9:30 or so, i headed back to the RMH.

I received a call around 4:30am from the nurse, first explaining to me that Henry was fine (that's an EARLY CALL!), but that his breathing had been quite elevated throughout the night and she wanted to prepare me for that being a topic of possible delay in discharge. They suspected that because Henry has missed a couple of his lasix doses (the diuretic medicine used to reduce the swelling and fluid retention caused by Hank's heart disease) that his heart was working a little faster and harder. As soon as he got back on track (one dose given in a slightly greater amt and sooner than usual), he was himself again and we were discharged by NOON!!! Not much of a delay at all. I was surprised and elated!!! I disconnected Henry from every wire and sticky, took off his pulse-ox toe band and paced anxiously, waiting for a nurse to remove his IV (which i could have actually done as well, but i think i would have gotten in trouble for that one!). We raced back to the RMH to check out and were home by 3:30ish - - just in time for Ron to go to work. :-( Oh well.

Front View: Surgery Day, 5 Days Post-Op, 7 Days Post-Op

Looking Up: Surgery Day, 7 Days Post-Op.
Look how much the nubbin has been PUSHED DOWN!

So here i am typing, nine days after surgery, and Henry continues to change his look. The swelling has gone down just about entirely, the stitches are dissolving, and more often than not, when i glance at him, I barely even notice the stitches. Just a few days ago (about a week post-op), he began smiling again. Before, he had no interest, and just yawning or sneezing made him moan and cry. Now, he sits in his bouncy seat, feet and boarded arms a-flailin', smiling and LAUGHING and cooing all to his little self, or for anyone else that will listen and enjoy. Many times, when i can hear him doing this, i stop whatever it is that i'm doing to enjoy him. Just his smile is so DIFFERENT - - and it is something that I'm beginning to love as much as i loved his "first" smile. I wonder sometimes if Sam will remember Hank pre-op. Not just from photos. I'm doubtful. And i know Thom won't. But i'm so happy that we took so many awesome pics of Hank pre-op. I'll never forget that little nubbin, but i'll also not miss peeling and lubing it anymore! ;-)

As time goes on, i will post more pics of the healing process. And of course, another more refined lip surgery is forthcoming, in about 3-6 months i believe. I have a follow-up appt with Dr. Girotto this coming Friday, and i will be asking the time frame on that.

Thank you, dear friends and family, for asking all the time how Henry is doing and taking such interest in his development and change and growth, as well as the rest of our family. You guys help make our lives so very cool and happy!

Thursday, September 02, 2010


Henry underwent a procedure called a trabeculectomy yesterday (Warning: the link to the procedure is a YouTube video, not for the squeamish (but definitely for the surgical resident-in-training or amateur nurse, like me!)). It is a corrective glaucoma surgery, which he was diagnosed with about a month ago now. The surgery was incredibly successful and Hank's doing well today. He seems more concerned with the teeth pushing their way into his mouth than the condition of his eye, if you ask me.

So let's back track a touch...

Months ago, when he was truly just a wee one, in the middle of one of Hank's stay's at CHOP, there was much to do about his tearing right eye. It was detemined to be a clogged tear duct and drops were prescribed, several times a day. The tearing would fluctuate between clear and mucousy. I think 'conjunctivitis' might have even been tossed around a couple times, but without too much stink.

Fast forward to our last stay (which was over two months ago!) when Henry received his nissen surgery that helped, and ultimately HALTED, his reflux episodes. It was during that recovery that i noticed a cloudiness in that same right eye. Nothing TOO noticeable, but since i was spending a great deal of time rocking him and gazing into his little baby-blues-turning-browns, I could see it. I asked for an ophthalmology consult on several occasions with little success. When i got wind of being discharged, i took that opportunity to run home for a few days before returning with stuff to make our stay at the RMH comfortable (maybe you'll remember, they wanted us to stick around as a "just in case" since we had a history of returning shortly after getting home!). It was during that absense that ophthalmology dropped by, examined Hank, and diagnosed corneal abrasions from sleeping with his eyes partially open. I never did get to talk to someone, and as i type this, would love to read the write-up from that consult...

So, pun intended, i kept an EYE on the situation and wasn't feeling like it was improving. Neither did Hank's pediatrician here at home, who then referred me to Dr. Morella in Elmira. In the first appointment, he thought 'corneal abrasion' as well, especially since he saw a thin 'line' across his eye, where he thought his lid was resting when open during his sleep. He gave me some drops and ointment and told me to come back in two weeks.

At the two week appt, as soon as he walked in the door, before he even CHECKED Henry again, he said, "ya know... i've been thinking... i have a theory... this whole corneal abrasion thing..." and then got a tonometer used to measure intraocular pressure (IOP). His reading was coming up very high. Anything higher than 20 is noteworthy, and he was pulling up 50s and 60s with Hank. The next step was an appt with another ophthalmologist, this time in Rochester, Dr. Siebold.

After her assessment, coming up with the same high numbers, she scheduled Hank for 'possible but probable' surgery. The idea was to put him under enough to get a very accurate IOP reading (it's hard to do with a squirming disgruntled baby!), and if necessary, right then and there, do surgery. If not necessary, to continue the G-tube meds he had been on for the weeks leading up to this moment.

I hung out with Henry in his little pre-op room, waiting for his turn, adorned in blue paper jumpsuit, booties and shower cap. About 15 minutes after kissing him goodbye and nodding to the anesthesiologists, entrusting them with my lil guy, a nurse came out to the waiting room to inform me that the surgery was indeed needed and he'd be all set in about 2 hours.

Dr. Siebold greeted me in the pediatric recovery ward and explained how the surgery went about as perfect as this kind of surgery can go. Hank had a guard resembling a gigantic fly eye taped to his head and was definitely groggy. But at the same time, he was HUNGRY - he'd gone 12 hours with no eats! So i fired up the feeding pump, let him snooze for a bit, and soon was officially discharged.

In one week, Henry will be readmitted for his first cleft lip repair, called a lip adhesion. This is the bigger of the two surgeries. I'm experiencing a few different emotions, none of which, really, involve anxiety or worry or concern. Mostly a feeling of having my son's looks CHANGE. Wanting him to be comfortable and happy. I completely trust the surgical team for this procedure and I can't wait to see them work their magic on our lovey...