Monday, March 29, 2010

Comforts of Home

Henry is back home. CHOP loaded him full of IV antibiotics, sent us home with some oral ones, and Mom's got instructions on how to pack/change the wound site. We're good to go! His pediatrician saw him this morning and gave us 2 thumbs up. You'd never know a thing was wrong gauging by Henry - he's cool as a cuke. Like his bros were at this age. The next CHOP visits (yes, plural) are right around the corner: Next Monday for a cardiology follow-up (Ron's venture), next Friday for a Plastics consult concerning his cleft surgery(ies) (Chris' venture) and possibly, depending on what Plastics says, a trip for his cleft lip reconstruction in 2-4 weeks. Fun times!

Wednesday, March 24, 2010

Back at CHOP, A Touch Earlier Than Expected

Henry went in for his weekly pediatrician appointment Tuesday morning. I showed his doctor his goopy eye (conjunctivitis?) and his incision site which was starting to look a little infected (redness, swelling, some discharge). She was about to take a culture swab and then told me she'd rather call his surgeon at CHOP for some guidance. To give her a second. She came back less than 10 minutes later and told me that she spoke to Dr. Gaynor and he wanted me to come down to Philly NOW. As in, leave the ofc, go home, gather your stuff, and drive now.

So that's what i did. I was able to pack everything in a whirlwind in about an hour (packing conservatively but thoroughly and quickly is hard for me to do!). Checked my list twice over, and i set out. I'm efficient at setting up Henry's feeds for the road now, compared to that first ride home from CHOP, a mere two weeks ago.

I arrived around 6pm, and 6 hours later, was finally winding down for the night. I had to spend the night in Hank's room on a weird pull out chair/bed thing, but that worked out fine. I actually got some decent sleep. It was kinda fun having our room window overlook the indoor atrium where a gigantic mobile hangs. The lighting was unique and calming.

In those 6 hours, a lot went on. I had to check in through the ER, as i had arrived too late to check in to where they initially told me to go. The ER was *PACKED*. I walked up to the front desk, and in true professional CHOP fashion, there was a note on Henry's electronic file telling them i was en route from NY and to contact the appropriate people upon arrival. I was taken to a back area, away from "the masses," and Henry was checked over. During that checkup, he proceeded to throw up his entire feed from 35 min ago. When he does this (the second time), i call it "Niagara Falls." He shows little expression or reaction to the constant FLOW of formula coming up from his tummy. Just POURS out. Poor lil guy. We're still not entirely sure WHY this is happening. Could simply be a product of having reflux, of course, a more extreme version. So i cleaned him up and continued to wait for a someone to take us wherever they needed to take us. I had a feeling we'd be going back to the Cardiac Care Unit.

Sure enough, we were eventually brought up and put in a room. Henry once again was hooked up to all the monitors i was happy to see go when we were discharged. Wires galore! Oh well. A variety of folks came to check in, including cardiac fellows, attendings, resident on call, several nurses (many just to say hi again, 'cause everyone remembers Handsome Hank!) and a couple other folks in between, including a phlebotomist (someone who takes blood and puts in IV lines). She was a small Asian lady with a very thick accent, and she and three other nurses spent a harrowing 40+ minutes trying to find a little vein on any of Henry's 4 limbs. They warm up heat packs and wrap them around his ankles and wrists before trying, but even that didn't help. I'm not sure what i was doing when they started (i was out somewhere - maybe going back to the car for stuff), but when i returned and started in with my reassuring Mommy talk, that's when they got a vein. COINCIDENCE?!?! Could be... but i'd like to think not.

They've taken some cultures and found some bacteria that they are now treating with 2 different antibiotics. No one feels this is some out of control situation requiring him to a lengthy stay. I think we "nipped it in the bud," whatever IT was/is, so that's a good thing. His surgeon came in to check on him this morning, all of 43.5 seconds. Dr. Ravishankar, his primary cardiologist, also came in. I think she was secretively happy to see lil Henry again so soon, despite that not being the plan.

So i type this now from the Ronald McDonald House; i just got in this morning. I came over as soon as i heard to take a shower and check out my "closet" of a room, which i LOVE and which will suit me fine while i'm here a couple days (notice i did not say WEEK or weeks). With some luck, i'll be heading home by Friday.

A BIG PRO HERE: I am able to pump in a more timely fashion, which might help increase and bring back my production. When i am home, time completely gets away from me and i often go 4-6 hours between pumpings, entirely too much time to keep up my supply. I'd love to give Henry as much milk as i can, for as long as i can, but i do not plan to beat myself up on this topic. He's gotten almost 2 months worth, and i'm proud of that, considering he's never had direct contact with me ever. *sniffle*

Well, i think i will head back to the lil guy and see if i didn't miss bathtime and G-Tube re-dressing. And if i did, i'm willing to bet that no one babied his dry lil mouth like i do, and so I'm off to make my lil guy handsome and comfortable and give him luvvins. I'll be back as things develop......

Friday, March 19, 2010

Thom's First Day of School!

Well - - as i stated with Sam's First Day of School, it's Thom's first day of daycare, but we like to call it school. He'll be going for at least a month or so... just enough time to get my bearings at home with Henry and get through this slew of initial doc appointments and such. Gimme some time to get my house in order and whatnot.

I stayed for about 45 minutes. Thom acclimated just FINE. Of course, at this age, children mostly play by themselves NEAR their buddies, but just starting to interact. Thom was all about checking everything out, picking up everything and inspecting it. Particularly quiet on this exploration, but calm and happy. When i left, they were beginning to have sensory play at the water table. There are about 10 kids, only 2 are girls. Now adding one more BIG BOY to the mix! He is the youngest in the room, just like Sam was. Some kids, i noticed, are using some words. Would be interesting to see how snack and naptime went. Thom will have to lay on a mat. Of course he's still in a crib at home. This will, of course, only help to transition him to being "free" and moving to a big boy bed, which Ron and i have been discussing, MIGHT be right to a bunk with Sam. Not sure about that yet. We've always got the toddler bed that Sam started in.

Thom has mastered two "words" --> "uh oh" and "wow." He can repeat Nana and Dada if asked and he's willing, but he's quite stubborn with Mama. That said, he LOVES to cuddle into me when i sit down in the playroom with him. This is EXACTLY what i'm talking about when i say i want to dedicate some 1:1 time with each of my boys. If i'm running around nuts, i feel like i'm missing that special TommyMommy cuddle time. It's the BEST!

I'm most curious to notice if Thom's various skills improve. At his recent 18 mo checkup, the doc wanted Early Intervention to test his hearing due to the lack of verbal skills. I don't feel its necessary. I think Thom's hearing is just fine, i've 'tested' it myself and he's passed. I believe Thom will talk when he's ready and right now he's getting along fine with a lot of smiles and screeches. Of course i try not to cater to the screeches ENTIRELY, but you can only try to "make" a toddler say JUICE so many times before you just give it to him to save your eardrums.

Monday, March 15, 2010

We Are Home.

I apologize to all you for not updating this sooner. But as you can imagine, now that i am home, i am BUSY. I have been going non-stop since i walked in the door. And if i have some down time, i'm not on the computer or even watching t.v., i'm literally SITTING in the chair and rocking ONE of my three boys. Ideally i would clone myself about three more times. I've said this so many times, its old news. I know i'm not the only Mom to say this either.

The next few weeks are extremely hectic. I have all sorts of appointments and paperwork, as well as squeezing in a follow-up trip back to CHOP to meet with general surgery (to check Henry's G-Tube) as well as the first consult with Plastics for Henry's cleft l/p. They are aiming to do the first surgery on the lip at the three month mark. That's in a month and a half!

I admit that I am having a hard time adjusting to having THREE children to take care of. I'm not entirely convinced that i would feel less stress were Henry not needing special care. I think if the age gap were greater between especially Thom and Henry, I MIGHT manage easier. But I'm constantly feeling torn among all three which is then leaving me feeling like i'm ignoring them ALL. At least for a month, my dad has graciously offered to help us out by putting Thom in daycare three days a week, along with Sam. The days do not coincide, unfortunately (or possibly FORTUNATELY), but it will be a way of getting things done, focusing on Henry, as well as individualizing some love for all three boys, at least for a while, while things are still settling down and getting situated.

I am now a G-Tube Dressing-Changing PRO! I do it daily and its no big whoop. I KNEW i would feel this way, and i'm just glad to have gotten to it so fast. I've also established a little daily "moment" with Henry in his mouth care. That means i take a little sponge on a stick, get it wet, and clean out the MUCK from his mouth drying up. Then i goop up his lips and 'nose-thing' with vaseline to keep it all moist. He sits there calmly and lets me do it. I think he knows he's getting some special luvvin care. :-)

Sam is WONDERFUL with Henry. He often comes up to kiss his head, gently touch Henry's little nose and say "You're such a good boy, Henry." Sam often asks when I'm going back to Philly and i don't focus on that very much. He continues to tell me every night at bedtime, after our hug and kiss, how much he missed me and asks when i'll be leaving again. I keep telling him that I'm home now. "For good?" - "For good." Thomas, on the other hand, has nothing to do with Henry other than going up and stealing the pacifier from his mouth. Otherwise, he doesn't care.

I am very much riding a roller coaster of emotions these past few days. One day is VERY good and very positive and everything seems very doable and natural and manageable. Then the next day, i wake up with tears, sure that i cannot handle anything and it's all TOO MUCH. I am eager to find a more reasonable and sensible MIDDLE GROUND of emotion and well-being. I think Thom going to daycare for a bit will help find that middle ground, as well as providing some awesome and much needed stimulation for Thom. I remember when Sam went to school, watching him emerge and grow and it was exciting! Ron has been amazing through all of this, very much my ROCK and just as stable. Ron just asks what needs to be done and does it. I envy him in many ways for being so amenable with our situation. We balance one another quite well, this is coming out more and more.

Updates and pics forthcoming, i promise. Just gimme a little time... :-)

Wednesday, March 10, 2010

From the Mouse Rooftops???

I want to shout it from the HUMAN rooftops, but i'm terrified of jinxing things - but - rumour has it that Henry and I are comin' home tomorrow!!! The reason i'm only whispering it is because the resident 'slipped' something about SOMETHING on his upper spine they want to look into further. Honestly, i feel like MRIs, at this point, are a blessing AND a curse. Stop finding things and whatever you guys do, quit casually dropping the term "neurology." That's the last team i want interfering with our slew of 'stuff' already!

But I digress. Hopefully i will mention no more of what i HEARD this morning and Henry and i will be packin up tomorrow and heading back to Corning. I foresee the trip taking me 6+ hours. I am under strict direction to stop at LEAST once for feeding and changing and walking him around for 30 minutes. Part of me thinks this will be easy breezy and the other part is very nervous for what "could be." And WHAT COULD BE you might wonder? Well, a bunch of things. I mean, imagine for the first time since your child's birth, your child who has been diagnosed with a few significant issues, is off all the monitors that you've gotten so used to hearing beep and boop. There is no more casually looking up to see if his heart rate has reached a certain level. There is also the fear (probably completely unfounded, but POSSIBLE, none the less) that his G-Tube starts leaking profusely or WORSE, comes OUT! And there's the challenge of keeping his pacifier in his mouth from a backward seating position in the back seat! His binky is his BUDDY!

This post is not meant as a vent session, and I'm certainly not complaining. What i'd love to convey in words is the dichotomy of what i'm feeling and experiencing the closer i get to discharge. There is a certain amount of UNBRIDLED JOY knowing that i will be reunited wholly with my family in my HOME. Joined physically to the hugs and luvvins of all my men and then all my close friends in town. There's the comforts of my BED and my bathroom being MY OWN.

But then there are all sorts of trepidations for this being a whole new direction in my life - our lives. i was given the opportunity, much wanted on my behalf, of changing Henry's G-Tube dressing for the first time since his surgery 5 days ago. The nurse had told me earlier in the morning that he had worked himself up earlier, fussin', and that his site was 'draining' a little. There is a LARGE DIFFERENCE between a little drainage on the perspective of a trained, impartial nurse, and that of Henry's MOM!!!

I opened the swaddling blankie and the first thing i noticed was a foul smell, followed by a stained and damp undershirt. The nurse assured me this was fine and normal. Then I took a deep breath and began the process of changing the dressing, which means removing the damp, grungy, brown gauze and surgical tape. The surgical tape has rendered Henry's oh-so-delicate baby skin RAW on his belly. The gauze was gross and sour. I felt my hands begin to shake with nerves, scared that i was going to dislodge his Mic-KEY button from his abdomen ENTIRELY and there would be a gaping bloody hole with stomach contents pouring forth. That didn't happen, btw. But along with the shakes, i started sweating and then the tears started coming. Never in a million years did i imagine myself doing what i was doing on my child. But while i was experiencing all this, i never felt like quitting because i realize that the more i do it, the more it will be like changing a stinkin' (pun intended) diaper. You do whatcha gotta do, and I GOTTA DO THIS! For the record, Henry was being GREAT thru this whole exploration and learning. He only wiggled a little bit. I cannot imagine how the whole thing would have gone had he been bucking and kicking and screaming, as babies sometimes do.

Henry's nurse yesterday, today AND TOMORROW (completely unprecedented in this unit) is named Molly* and she has been AMAZING. Not only is she gracious and patient, but she's an excellent teacher. She's good at praising me too, which helps! Haha. She's also rocking in the 'contraband' dept., packing and setting me up with all sorts of extra supplies i'll need at home, including some things i know won't be given to us by home care.

... and that's a whole other topic for perhaps another time. Home care. Home supplies. I'm going to not only become a NURSE, but completely schooled on what is and what isn't covered by insurance. I'm in the process of applying for Social Security disability income for Henry, thanks in LARGE part to the direction of two or three friends and THEIR knowledge. Not once did either social worker at either hospital inform me of this privalege and benefit. I naively thought that social security was primarily for a retired person's income. I have a lot to learn... in many many ways....

Again - i digress. So - psst - - I'm pretty sure Henry and i are heading home tomorrow, assuming that he's a good boy and passes his carseat test (has to remain in it for 2 hrs max).

"Then Mama... Mama I'm comin' HOOOMMEEE"

*name withheld to protect the HELPFUL and innocent.

Tuesday, March 09, 2010

Blog Stuff

Just a quick note about the blog. First, maybe you'll notice our background is spiffier. Just having fun with free backgrounds i found on a website. Easy and fun to change the feel of things.

Second - I have been LOVING the comments you guys leave on the blog. I love knowing that its being read and enjoyed. Of course, its the easiest way to update all of you in one spot. I wanted to let you know, however, that there IS A SPOT for you to type your name, but it's kind of hidden. When you hit "Comment" you'll notice there is a choice for "Name/URL." If you pick that, you can simply type your name in the name box and then leave your comment. You don't have to register and you don't have be "Anonymous" anymore. Just an FYI.

Today is Tuesday. I'm hoping tomorrow i'll have a NOTEWORTHY new blog entry (wink wink)... we shall see.

Sunday, March 07, 2010

Mini Update

This past Thursday, Henry had the G-Tube surgery afterall. It's a small, simple feeding tube that now comes out of the side of his belly instead of going down his nose/mouth. First of all, its WONDERFUL to see little Hank's entire smooth face, void of tape and tubes; it's been that way since Day 2. Second, the G-Tube has a little "button" that you can turn on/off, so basically, when he's not feeding, there doesn't have to be a tube coming out of him. I particularly like this option. Right now, the whole site is healing and we have to be careful. Assuming the healing process continues to go smoothly (it already is, and it's Sunday) and Henry keeps doing well, there is an excellent chance the two of us will be headed home within a week! Keep your fingers crossed. Needless to say, such a momentous occasion will be noted in a grandiose way!

While Henry was being operated on, I had already made the decision to hop home for a couple days, in conjunction with Ron having time off, so the two events overlapped. Sam did go to school on Thursday, as usual, but that allowed me a little more 1:1 time with Thom and Ron respectively. The following day, Friday, the four of us spent it together. In the morning, i went to Wegmans and was greeted by everyone with warm hugs and smiles. It felt SO GOOD to come 'home' to my SECOND family. I can't believe i've found such an awesome place to work with such amazing, caring people. It's NICE. We even had time to meet Dad at Friendly's for a little afternoon snack. Then that night, Ron and i ventured to Rochester to catch the opening-night viewing of Alice in Wonderland in 3D IMAX! What an amazing experience. If you've never seen a 3D movie yet (and i mean the CURRENT kind, not the "It Came From Outer Space" 1950s kind), then you MUST go. And then as an added treat, try to get it in IMAX format (5 stories high). Whoa.

In the meanwhile, Sam and Thom had a WONDERFUL time with my friend Michelle and her friend Cherilynn. Sam asked me on Saturday if we could have Michelle over again some time, he liked her that much! So cute. Thom was so funny being goofy and making everyone (especially HIMSELF) laugh. Then around 10, our other friend Jason and his girlfriend Robin took over and basically kept the house warm until our return around 2. It was a REALLY NICE fun get-away evening. Much needed.

Life is about to change (...again). It's going to go from Hospital Updates to Crazy Telford House Updates. I look forward to writing about Thom's reaction to his little brother (he's never seen him yet) and maneuvering around our world with Henry. I'm scared AND excited to be coming home. What helps me immensely is knowing and thinking about ALL THE PEOPLE in our lives extending a hand. I'm often tossed the sentiment, "You're so strong, Chris. You have such a bright, positive attitude." The 'secret' is that i'm able to do that because of my support system: YOU GUYS!! So stand up straight, 'cause i just might call on you! ;-)