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.
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!
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!
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