Saturday, February 27, 2010

S'Been One Month!

Henry's one month old!
Time flies when you're hangin' out at at CHOP!

"Smile, Henry!" - - and he did!

Henry's band surgery is officially a success; it is doing it's job of limiting blood flow through the pulmonary artery to his lungs. As a consequence, it has lowered his heart rate and respiratory rate. He still breathes faster than a healthy-heart baby, but it's working for him.

Post-surgery, we hit a couple road bumps, such as some irregular stools prohibiting Henry from eating for four days. They supplemented him with IV fluids and IV fats/nutrition and after many tests and xrays, the problem resolved itself. He's almost back up to full feeds which are being continuously delivered through his NG (nasogastric) tube. Another yellow flag, which we're still dealing with, are occasional Bradycardia episodes, or "Bradys" for short. This is when Henry's heart rate dips unusually low, usually less than 60 beats per minute. His Bradys can range from 40 bpm to 80 bpm per episode and usually only last for about 1-6 beats, mere seconds, but noteworthy. They seem to occur several times a day. Because of this, more various testing has been ordered, including an apnea test (Trivia: apnea comes from the Greek for "want of breath"), which is going on yesterday into today.

In order for Henry and I to come home, several things need to happen. First, they want him to start actively gaining weight. As of yesterday, he weighed 6 lbs 9 oz, which is 1 oz less than he weighed at birth. Usually babies lose weight in the first week after birth but then start gaining. Henry is 30 days old and still not up to his birth weight, but he's doing well on getting there.

Oh, big yawn!

Second, they want to decide how he'll handle his feeds. Ideally and usually, they do not like to send home babies/children that need CONTINUOUS feeding through their NG tube. They like to see at least 50% bottle feeding. In Henry's case, this might be difficult. You might think it is due to his cleft lip/palate, which is actually NOT Henry's case; it is due to the effort it takes to eat because of the cleft l/p, the amount of energy it takes to WORK at eating. That works his heart too much. Also, because of his open palate, his airways are combined. Usually babies breathe through their nose when they breast/bottle feed. If Henry does this, he will suck fluid down into his lungs and choke. His sucking reflex is quite strong, it's all the other OBSTACLES that are causing him such grief to bottle feed, poor guy. As a result of ALL THE ABOVE, Dr. Ravishankar, Henry's cardiologist, mentioned the possibility of inserting a "G" tube, or gastrostomy tube. This is a surgically-placed permanent feeding tube that lasts for up to 6 months and will come out of his abdomen.

Third, and more generally, they need to figure out what kind of monitoring will be needed for Henry. Will he continue to have Bradys? Will his respiratory rate continue to dip now and then requiring a monitor? What about if he has an apnea issue - is that a separate monitor? And if there are a bunch of monitors, what will that require from us, as parents? Can WE work all this stuff or will a home care nurse need to be set up? So many questions, many still unanswered...

So, as usual, Henry's and my stay here in Philly is "Day to Day." I no longer really think ahead. I figure when they're ready, they'll say the word and it will take me less than 30 minutes to get my stuff together and boogie out!

Thursday, February 25, 2010

Natalie and My Boys

Three of my favorite people in the world came to see me this past weekend! Natalie came for a quick overnight Saturday to Sunday. She got to hold lil Henry a couple times and treated the two of us to another of the four Indian restaurants around the RMH. Delicious again! I think i've certainly fulfilled my Indian craving by now! We also spent a lot of time doing what we do best together: chatting and catching up. Our lives are both so busy and so different, and it makes for EXCELLENT conversation!

Then, later Sunday night, Samson, aka "Smart Cookie," and my super lovey hubby Ron, came to visit and it was EXACTLY what I wanted; I've been missing my family like crazy. Sam was a lot of fun, and Ron had stocked up a ton of hugs and kisses for me. The three of us had a wonderful time together!!!

The boys arrived around 2:30 am Monday morning, and much to my surprise, CHOP Security gave them a ride to the RMH; I had planned to get in the car to come get them, so all i had to do was sneak down in my slippers to let them in! Sam looked so cute in his coat and boots over his footie pjs! Those first 10 minutes were kinda fun and weird at the same time. It had only been 2 weeks since i saw the gang, but immediately Sam seemed so much older, and 'talky-er' and wiser and taller. He seemed EIGHT YEARS OLD, and not just four. And Ron's dimples and smiling eyes warmed my heart like he did on our first date 7 yrs ago. I think i can liken the reunion to "falling in love" all over again. Absence truly does make the heart grow fonder!

The three of us managed to get in some ZZZs before waking to a new sunny day. We grabbed some eats in the kitchen before heading to visit Henry - the first time for Sam! Sam had gotten over the cough that kept him from seeing Henry the first time around, but now Ron had gotten it, as well as just getting over a little bug going around. Ron and Sam wore masks and our visit was brief. Sam asked me again about Henry's cleft lip, and i explained it to him, and that was the end of that. Sam thought Henry was cute.

All through the day, Sam didn't feel like eating and i didn't force him, and by mid-afternoon, he said that his tummy hurt. He didn't make too much of it, but he did mention it a couple times. And then, all of a sudden, his head was in the room trash can! And that happened a good 4 or 5 times. Poor bugger. Soon he was laying on the bed with a cool cloth on his head (I remember loving my mom doing that for me) and the next thing we knew, he conked out that way. It was about 6:30, suppertime. So Ron and i took turns going down to get something to eat. Ron came back to tell me there was a magic show going on that he wanted to check out, and he came back with a big balloon sculpture of a monkey in a palm tree. Sam loved it when he woke up!

The next morning we checked out the local "Philly Diner" on the corner and Sam only wanted toast and bacon which was fine with me. We decided to stay back from the hospital for a bunch of 'sickie' reasons and spend our time together. We ran some errands and walked around the city and came back to the room for a while. Sam watched some movies and we played a game.

That afternoon, we headed out to a Salvation Army to just snoop around. I was personally looking for a few different tops to change up my wardrobe here in town (i found three!). After that we headed to Chuck E Cheese to meet up with Katie and her kids.

I haven't been to a Chuck E Cheese in over 25 years!! I remember there being games and pizza and a big singing Chuck E Cheese, but beyond that, i had NO IDEA what they had done with this franchise. Now its a kid HEAVEN! There are a TON of games and rides to occupy them while Mom and Dad sit and relax (if they so choose).

The one free thing that they had that completely consumed Sam's entire focus was this great big "Sky Tube." It's basically a big gerbil tunnel attached to the ceiling where the kids can scoot around and weave into different sections. They climb up a platform in the middle and then scatter off. They can either climb back down or ride a slide down. He was all red and sweaty within the first 10 minutes! So much for having the stomach bug, eh? At one point, a mom came over and told us that she wasn't sure what happened, but that her kid came down from the tube saying that Sam hit him. Soon Sam came over holding the side of his head and started crying, saying some kid hit HIM.

We told him to stay outta the tube for a while and we introduced him to all the "Stuff That Takes Tokens!" The whole joint is about tokens! Play games, try to get more tokens - which all leads to spitting
out tickets that you then cash in to get OTHER STUFF. Katie had a fun 'rule' in which all the tickets any of the kids got were tossed into a pile and would be divided by four at the end. That worked well since Sam and Maya and Charlie wouldn't get as many tickets as Keller would. Sure enough, at the end, each kid got 110 'credits.' Of all the stuff Sam could pick, he chose a crazy straw, a long Tootsie Roll candy and a trick screw-thru-the-finger toy. A fun night for all of us.

Wednesday morning came too soon, and after rousing and packing and eating a little, we headed over to the hospital for one last visit with Henry as well as saying our goodbyes. Henry was SO ALERT and was very much looking at Sam and Daddy. I'm glad they got to see him like that, because its FUN! Sam was smiling at Henry and saying hello. Then, they were off; Ron had to work at 4 later that day. We said our goodbyes and before i knew it, my boys were off and i was flying solo again. I did not cry this time because i have a good feeling that we'll all be reunited again sooner than not, and THAT will be nice. Very nice.

Thursday, February 18, 2010

ABC - 123 - JUMP!

Sam's teacher Ayumi sent me the BESTEST email yesterday. She knows our situation and that Mommy is surfin' solo in Philly and missing her boys, especially our chatterbox Samson, so she sent me a note letting me know A Typical Day in the Life of Samson! It made my day, especially after a long morning of early rising and Henry's surgery. She told me that Sam is working more in depth on his letters (focusing on the letter "O" and words/shapes that use "O," including a drawing of Sam's face (!) as well as some OATMEAL!), stacking blocks to make dominoes and daycare's OWN version of the Winter Olympics, which is a funny combo of SUMMER Olympics because it includes the "Snow Long Jump."

(Notice the intense concentration on Sam's face in ALL the pics!)

Wednesday, February 17, 2010

Surgery: Part I

Henry indeed needed the PA (Pulmonary Artery) Band surgery, afterall. It was scheduled for 7:30 this morning and so i set the alarm for 5:30, but had been awake since 5. I got my act together and was in the van on the way to the hospital by 6:30. I arrived at 6:45, thinking i had just enough time to snuggle Hank before they wisked him away. Turns out i had TWO HOURS to snuggle him and try to console his Hungry Jack tummy. By 9;30, i was handing him over to the operating room nurse with NO TEARS! I guess that's how confident and trusting i am of this crew at CHOP. After saying a brief "goodbye" to Henry, I was taken to Dr. Gaynor's office for the pre-op consultation. He was very direct with good eye contact, but i could tell he was a man of few words, more action. Fine with me. He told me what he was going to do (which was verbatim what the Physician's Assistant told me he was going to do) and i understood him 100%. I'm proud of myself for keeping up with Med Talk Lingo, using lots of acronyms (PA, VSD, DORV) and getting it! Go me!

An hour later, Henry's nurse for the day (aka, my personal liason between me and the surgery team) found me sitting in the sunlight on the bridge between the CICU and CCU and said, "Well... Henry did great! They are closing him up now, but everything went perfect and he's already exhibiting a slower respiratory rate! He didn't need XYZ (some procedures they said he might or might not need), so that's good news too!" A snuggly soft blanket of CALM fell across me, it was so nice to hear! I wouldn't say i was on the edge of my seat, but there was a general light "unease" of NOT KNOWING in that hour. Every consultation, before any surgery, ends with the line, "... and of course, with any surgery, there is the chance of death." I love how they TOSS that one in there. I get it - i know they have to - and its TRUE - but i found myself fantasizing mini themes around those words. BYGONES... Lil Hank made it through and seemingly with flying colors. That's mah BOY!

So I hung out with him post-op for a couple hours, reading a book and petting him now and then. He was quite out of it, under the heat lamp, spread eagle and very much not caring WHAT state he was in post-op. Lil bugger had a tube or wire coming out of every limb and even more out of his midsection. And of course his smooth, rapid moving breast is now covered with two little white gauze bandages. I asked what everything meant and felt good knowing all its purposes. I want to know EVERYTHING i can know about what Henry goes through.

I was able to go back to the RMH, grab an hour and a half snooze, and headed back to the hospital for an evening visit. He was still warm and hangin' out and still sleepy. He did open his eyes, groggily, a couple times. I suppose the more he comes out of it, the more he will DECLARE HIMSELF (everyone is a big fan of this phrase). They'll be doing a slew of routine xrays, EKGs, and blood tests post-op, making sure everything is on course.

GOOD NEWS! Ron and Sam are going to visit!!!!!! Ron was able to get two and a half days off and he and Sam are heading this way for Monday and Tuesday, heading back Wednesday. It will be SO GOOD to see two out of three of my MEN. I miss Tommy too, but this will be an easy trip for everyone involved. Thanks once more to Shirley for holding down the fort with lil crazyman Thomas. Can't wait to do our GROUP HUG AND KISSES!!!

So "Surgery: Part I" is a success. I have no confirmed date set for The Big Surgery, but Dr. Gaynor, in his consultation, tossed out around the "5, 6, 7, 8 month" mark. That's verbatim. Quite the gap. We shall see.

Monday, February 15, 2010

The Power of Dear Friends

In the past 48 hours, it has been made abundantly clear to me the power of dear friendships.

Saturday evening, I went to my friends' Katie and Dave's house to spend the night. They live in West Chester, about 45 min from me here in 'The City.' Katie and i have been friends since we were roommates our freshman year in college; we hit it off from the start. Our lives have changed, of course, through the years, but Katie and i never lost sight of the friendship that brought us together. And her husband Dave is just a huge added bonus! I was a little sad that i didn't get more time to hang out with Dave as well, beyond the literal few minutes i saw him.

I left Sunday morning to head back, only to be joined by Katie again later that afternoon and into the evening. She got to meet Mr. Henry Telford and fell in love immediately. I loved looking at her face as she held him - so heartwarming. After a nice visit with Lil Man, the two of us went back to the RMH, she got the tour, and then I got to fulfill a craving i'd had since Henry was 3 months old in my belly: Indian Food. Yum. We had about 4 restaurants all within a few blocks of us to choose from and picked "New Delhi." It was crowded and warm and smelled wonderful and I stuffed myself with spicy goodness. Thanks for the treat, Katie!!!! And thank you, too, for spending those days with me - it was a nice little diversion from the "same ol."

Then, today, Monday, the next day, four of my dearest coworkers from Wegmans made a DAY TRIP (5 hrs one way) to see me and to meet Henry. We met at the hospital around 10am and everyone got acquainted with Hank and his nurses. Ron packed some clothes for me, as well as for Henry, and so i was excited to put his little clothes stash at the end of his bed - some comforts from home. Amanda brought him a super soft blankie and big stuffed froggie and Pam brought a lullabye CD which i'll play for him tomorrow (he's got a portable player right in his bed!).

The ladies also brought me several cards from folks in the store, all expressing their love and well-wishes for our family and Henry. As i type this now, its hitting me how amazing my friends are. How wonderfully loving the people i work with are. Even the folks that i barely say HI to... honestly, its so incredibly humbling. I've got so much "Paying it Forward" to do, i don't think i'll ever break even!

(From left to right: Amanda, Mary, Pam and Christa - Halloween 2007)

The gals then treated me to an awesome yummy lunch at a joint around the corner called "Marathon Grill" and from there we went to King of Prussia Mall, the biggest on the east coast (or so i hear). The ladies had a blast hopping from one store to the next.

So to my friends in the above post, as well as everyone that Ron and i know who have included us in their lives with our situation ---> i cannot express enough my thanks and gratitude. I can only hope and wish to bring it full circle in some way, in this lifetime.

Sunday, February 14, 2010

Sunday, Feb. 14, Valentine's Day

The Latest: Henry was scheduled to indeed have the band surgery around his pulmonary artery for tomorrow, Monday. He is just not naturally limiting the amount of blood to his lungs as they were hoping, so he'll need a little 'help.' Thing is, last night at midnight, i received a call saying that his heartrate was dropping very low, and as a result they ordered several tests. They are suspecting a bacterial infection. And while not severe, even a minor infection will impede the plans for an operation; they do not want to subject him to that if there is suspect infection. So the operation has been postponed until they can monitor him further. They'll know better by midnight tomorrow...

Many of you have been asking "How is Henry?" I guess the 'baseline' answer, at this stage, is "Henry's the same ol." Not a whole lot changes on him from hour to hour, but enough small variables from day to day to keep him monitored, to delay surgeries and that sort of thing. "Day to Day" is the answer, albeit a vague-sounding one.

Our family SO appreciates all your thoughts and inquiries. I wish i can soon post a gigantic HENRY IS COMING HOME! - so please tune in for that great news, which i hope is coming sooner than later. Not only Henry coming home, but Mommy, to her two boys and loving husband. I miss them terribly. More than i figured i would. Sucker me.

Saturday, February 13, 2010

Wednesday, February 10, 2010

The Rest of Our Stay in Philly...

There's been more happening "Behind the Scenes;" needless to say, aside from our concerns and interactions at the hospital with Henry, life went on around us in Philly.

We arrived here late Saturday evening, January 30th. We stayed that night at the house of one of Ellie's friend's, Jillian and her husband Marcus. They proactively reached out to us, through Ellie, when they heard of our situation. They were so generous in offering us their comfy and cozy row house in the heart of the city. Luckily, for everyone, we only had to shack up ALL OF US (Ron, myself, the boys, Shirley and Dad) for that one night before we were able to get into the Ronald McDonald house that Sunday afternoon. Let this be another THANK YOU to Jillian and Marcus for their hospitality.

To add to their kindness, Jillian and Marcus offered to take the boys to the Please Touch Museum on Sunday while Ron and i got situated at the Ronald McDonald House and with our first visit to CHOP. I gave our camera to them to take pics in our absense and they really got some GREAT ones. That evening (or maybe it was on Monday...), we all met up for supper at Chili's. Thomas was in ultimate screeching mode during that meal. Somehow we all made it through! ;-) My dad returned home in his own car to Corning the following Tuesday.

Here at the RMH, Sam quickly became friends with a little boy named Jim. He was a year older than Sam and he has DiGeorge Syndrome. His family and ours often joined each other for playtime and mealtimes. Jim warmed up to Ron and i as well, as he often sidled up to me asking me if i liked blueberries and if i had ever seen Wall-E. He was adorable. I also got a kick out of watching the dynamic between the two boys. Sam played quite well with him, but quickly became the "leader," and Jim the eager and willing follower. At one point, Sam told Jim that no one was allowed up the ramp (wheelchair ramp) because of the monsters - or something like that - and then they kept running around. At one point, Sam went away for a minute and Jim started up the ramp and then came back down. I beckoned him over to me and whispered "Jim - you can go up the ramp if you want to." And very seriously and with concern, Jim said, "But Sam said that i couldn't, so i won't." Hmm...

One week later, on Saturday, Feb. 6, we were dumped with 24 inches (that's TWO FEET (sounds more impressive that way)) of snow! Some folks staying at the House had never SEEN snow, let alone that much. Ron and Jim's dad Dustin bundled the boys up and took them out to muck around. Of course we did not come prepared at all for snow. Sam actually asked me if i had packed his snowpants. Wished i had, bud. So Ron tied plastic bags around his sneakers (no boots either!) and hoped for the best! The boys had a great time. The snow was above Sam's knees! I'm sure he had a good time trying to wade thru the white stuff.
Soon, Jim and his mom and dad Karen and Dustin returned home to Alabama and Sam was without a playmate for a couple days. He found a little girl, Zoe, from England to pal around with, but it wasn't the same. Not only was she a GIRL (ewwww), but she wasn't Jim. Boys'll be boys. I do enjoy listening to the English accents in children, though.

Ellie came to visit on Sunday evening with the idea that Henry might need the band surgery on Monday morning. The medical team planned to have the OR prepped and ready to go should the decision be made to have it; turns out it was decided against, and Henry remained stable, status quo. Ellie and Ron and I then made the big mutual decision to send everyone home (minus me, of course) to get things back in order at home, routine back in place, Ron back to work, Sam back to school, that whole thing. Of course its not the same without MOMMY (!), but it comes pretty close. I miss my gang already, but I've been taking advantage of napping and frequent visits to the hospital to hold and rock and sing to Henry - that is, when SNOW is not keeping me House-bound. Eek.

Below, for your enjoyment, the works of our budding photographer Samson. Not too bad, if i do say so myself...