Wednesday Update 1pm

Coupla things have been happening/discovered with Henry since my last massive missive (like that one, Dad?)...

On Monday night, Henry finally exhibited all the dangerously low vitals that he showed everyone at Arnot. He brady'd quite frequently and his oxygen saturation levels dipped in conjunction. Now they had something to go by on THIS end. This prompted a myriad of tests (bloodwork, xrays, echos, etc etc).

From then til now, Henry has had a milk test (to evaluate his reflux severity) and relatedly, is going through a more specific reflux test to see how high UP it goes into his esophagus. It is like an NG tube that is directed thru his mouth into his stomach, but it has little electronic 'notches' on it, all the way up. Every time he refluxes (which is just about constant), the tube will record where the reflux landed. BTW, for those of us learning right along with me: Henry does not need food in his belly to reflux. He has been off feeds for over a day (poor guy) and if there is a severe reflux issue, it will happen with or without food/fluids in his stomach.

Right now, they are trying to determine HOW to treat the reflux, which has definitely made itself quite present. There are a number of solutions, they are trying to figure out the best one. Some that i have heard: 1) inserting a "G-J" tube. This will feed him directly into his small intestine, bypassing the stomach completely, thus eliminating reflux all together. 2) surgically creating a 'nissin,' or a 'twisting' of the stomach around itself (using stomach muscles) to create a 'cinch' or closing off of the stomach back up into the esophagus. This is a more complicated surgery and would require them going back in to create it. 3) increasing or adding other reflux drugs. Right now, however, it seems that one of those types of drugs tends to bring his oxygen levels down, which is counter-productive to THE OTHER CONCERNS they are having with Henry, the desats and bradys.

Which is a whole other ballpark - - sorta. The two (three) can be related or not. Think of branches of a tree (that's at least what i am doing). They're all in the same tree, but sometime a branch may never lead to the other one.

Dr. Ravishankar mentioned to me yesterday that his hemoglobin level was low. He is at 10 and they like to see it around 13. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. If it carries oxygen, and Hank's oxygen levels are low, makes sense to boost them a little with some extra blood. This was decided to actually happen at 11pm last night, a phone call to my cell in the RMH room, that i had to consent to. I also discovered in this phone call that Henry has my blood type too: B+.

They also discovered that Henry has rhinovirus. AKA - - the common cold! This might be contributing to his cough (perhaps also reflux-related) and the "runny nose" that he's got. His eye is also getting goopy again. Poor little guy - - he seems a MESS in bed. Coughing, groggy, tubes and wires and he's hungry! I think he's figured out no one's gonna feed him so he's resorted to sleeping vs. energy-wasting crying. Smart kid.

It's hard for me to hold him because of all the tests they are doing, monitors attached to his body that are counting things and recording THINGS. Not to mention, when he is sleeping soundly and quietly with little congestion and coughing and ANY noises for that matter, i like to leave him alone. Letting my little mouse sleep.

To add a personal element to this post: I MISS MY FAMILY AND HOME SOOOOO MUCH this time around. I'm cool, don't get me wrong, but i guess, before, i was just coming and going to CHOP and not focusing too much on the fact that i wasn't at home. But now, i know how good it feels to be there, with Ron, and Sam and Thom's antics, and little Hank in his 'spots' (living room p-n-p, bouncy seat, swing, bedroom p-n-p) and i want to be there so bad. I spend most of my days at Henry's bedside, holding him, or not, watching numbers beep and boop, and i miss everything away from here. I find such power and comfort from my husband Ron being my rock. He knows how to hold me JUST RIGHT when i have an emotional tear-filled breakdown (they DO happen folks, believe me) or 10 minutes after i scream my fool head off at him for not putting laundry in the dryer (even though i've made it quite clear to EVERYONE that laundry is MOM'S THING, don't touch!). This paragraph is all about MY BOYS. Sam is being so much more astute to his surroundings and goings-on. This trip, for the first time, he started crying and said "Mommy... i don't WANT you to go to Philly!" He's now AWARE that going to Philly means i'm gone for a while. What a total bummer.

To conclude, thank you so much to everyone who's received a txt msg, a FB msg or a phone call asking for help watching Sam and Thom while Ron continues, to his best ability, to go to work without me being around. I'm so grateful for just being able to ASK. If you can help, you can, and if not, that's cool. But i'll never hesitate to ask. I, myself, anticipated returning to work this week, but Henry had other plans i suppose. A thank you to Wegmans, as usual, for being understanding of this.

Sigh. Ho hum. Dum dee doo... More to come, of course...

Brady Bunch

Check out Hank's beautiful long eyelashes - and growing!...

Well, we're back at being somewhere other than HOME a little too soon for my taste. What's kind of funny about that comment coming from me is that when I was here that first month of Henry's life, i remember being very leery about coming home. I liked and appreciated the comforts (so to speak) of the hospital. The reassurance that Henry had a nurse to his beck and call, quite literally, was a nice thing. I would get asked "aren't you eager to go home?" and i knew i was SUPPOSED to say "oh yes, very!" I mean sure, i missed the gang, but i was uneasy about taking on Henry sans nurses and with no monitors.

But i digress. Let's backtrack through to now. BTW, this is another long read, so go getcher self a glass/mug of your favorite beverage first (i'd quite enjoy an ice cold Shock Top, but the most i'm gonna get sitting here next to Henry's bedside while he's off to a milk test, is a ginger ale on ice! Ho hum.)

Sometime last week i was running around trying to sync up all our CHOP appointments to happen in at least the same week, if not for the same day. At this point, it was my understanding that we would have to be here twice in one week: at the beginning for his infected incision site inspection and at the end for a meeting with plastics to talk about the game plan for fixing Henry's lip. After being led from one person to the next, I ended up talking with the plastics division directly to set up a time and date. 10 minutes later they called me back to say they had discovered we have NY Medicaid (or "MA" (medical assistance)) and could not accept it. She was minorly apologetic. I sat there for a good 7 seconds with no sound or words to form. I truly was in shock. I actually made her clarify the news by saying it again, which she did apathetically. Well okay then. That's one appointment i don't have to stress about adjusting Ron's schedule and finding a sitter for the boys. As for the incision appointment - with a simple phone call, found out it is NOT necessary we return to Hank's surgeon for inspection - a simple check by Dr. Finnerty, his local cardiologist would do. Um, yeah, that saved us a 10+ HOUR drive...

Left: Dorene, an awesome volunteer who i chatted with extensively when i came in this a.m.
Right: a knee's-eye view of Henry and Mommy.

I then surfed the net for the Pediatric Cleft and Craniofacial Center in Rochester, NY, in conjunction with Golisano's Children's Hospital at Strong. I got their phone number and left a message. I was called back Thursday and chatted extensively with the nurse practitioner Christine and we had an appointment the following day, Good Friday, at their office. Ron had a big group of days off (some because we had planned for him to come to CHOP or to watch the boys at home if i went) and we we decided to "make a day of it" with the whole family. I also called my college roomie Kerry in Geneva to see if she had the day off and did she wanna get together, the whole gang. And she did! Sorry to all who might have loved seeing pics of all four boys (minus Henry) boys playing in a small sandbox shaped like a tugboat - we forgot the camera! Phooey.

The appointment went very well. I like Christine - she is forward, outgoing and most of all honest and direct. KINDA LIKE ME! She was totally cool holding Henry and impressed with his sucking ability given his situation. She was also excited at the small progress we made during a feed with a bottle. Henry was definitely working at the nipple and getting some dribbles. Then he just started fussing and not working at it, and so the consensus was to start bottle feeding for about 10 minutes right before a feeding. When he starts fussing or it starts taxing him, just finish the feed via G-Tube. Sounded good to me. She also evaluated the severity of his nose "nubbin" and the course of action to help bring it closer to his face before surgery. You can use a taping method or a retainer method. It was not decided yet which route to go. Christine should be in touch with me shortly.

Notice Henry's scalp IV. I had no idea the head was a GREAT place to find a baby vein.

Later that night, actually Saturday morning around 12:30, i was awoken by Henry refluxing his overnight feed. We give it to him in 2 portions, due to the time it takes to feed him; it's a 10-hr feed using formula, which should only be out at room temp for 4 hours max. After he settled down a bit and i wiped him up, he looked so groggy and seemed to be falling back asleep quickly so i changed his diaper quick and put him back "down." And by down, these days, it means inclined at about a 25-30 degree angle due to his reflux inclinations. Reflux is common with cardiac issues, especially cardiac babies. He's on Zantac to help ease this discomfort.

In laying back down myself, i was listening to Henry and felt uncomfortable with his breathing pattern. It was not only gurgly, as though there was still formula stuck in his throat, but it was SHORT, and then he sounded like he stopped breathing for about 10-12 seconds. If you're familiar with sleep apnea, its a similar sound. Breathing - pause - not breathing. Apnea can also be a fairly common thing with cardiac babies but Henry had done an apnea test without a noteworthy outcome. Nonetheless, he had developed a very steady pattern: gurgly labored breathing for 40-50 seconds, and no breathing for the rest of the minute. The breathing would come back with a gaspy coughy breath, a mini cry, then back to the gurgly breathing. I laid there disconcerted with how it all sounded and called the overnight number to my ped's office. The operator paged a nurse on call. Her return call was taking too long so i thought to call CHOP and spoke with the cardiologist on call there. The doctor, Camila, remembered Henry quite well and gave me some valuable direction: to monitor the breathing and check his color. If he was dusky/grey and the lack of breathing continued, she suggested i go to the ER.

Which is what i did. I picked him up to get him packed and he threw up again. This time, he looked so grey/white and kind of spacy, his eyes bugged wide open. Ron and i both thought it looked visibly bad. I chose to drive him myself to Arnot. Ron called the ER to let them know i was en route.

When i got there, the front desk nurse sat me down to get some general info, all while putting a pulse-oxygen monitor on Henry's toe, a common practice. Once the machine fired up after a series of beeps and boops (i like that phrase), his number came up 50. In hanging out at CHOP for a month and being inquisitive, i've grown quite familiar and knowledgable of all the numbers, what they mean, and what's appropriate for HENRY. 50 was not good. I looked at the nurse and as i was saying "is that right?" he was picking up Henry's carseat and abrubtly said "walk with me." He notified several people he walked into on his way to a room and by the time he sat Henry down on the bed, there were 7 people in the room.

Henry was put on oxygen immediately and his number QUICKLY and immediately came up - 60 - 67 - 76 - 83 - 91 - 96. Technically, 96 is HIGH for Henry; Henry breathes comfortably and safely on his own, with plain ol room air, at about 86-90. No matter though - he was getting some good air and his color literally rolled back up and only his face. Poor little guy was starved of oxygen. I was gently reprimanded for driving instead of calling 911 and getting in an ambulance (it never really occurred to me that he might need LIFE-SAVING equipment en route!). I was also told that we could have lost him if i gone back to bed and let things remain as they were. Well, i guess you can chalk the WHOLE event up to Mother's intuition/instinct. I mean - why did i wake up to his throwing up in the first place? Then of course after tracking his questionable breathing pattern and calling CHOP, i made the right choice to go in. It felt SO GOOD to get a cardiologist in REAL TIME on the phone to guide me, even if all the way from Philly (little foreshadowing here...)

Open............................ Closed

Two hours later, Henry was taken up to the pediatric unit on the 4th floor. I learned two things that night. 1) Henry, and babies/children in general, will only be in the NICU while still in the hospital after birth. Once the baby/child is discharged, it can never return to NICU. I do not know if this is a general NICU rule or Arnot's rule. I'm guessing the former. 2) Arnot does not have a PICU (pediatric intensive care unit). I thought they did. This too is a mini foreshadowing on why we are back at CHOP.

Henry remained in the ped wing for a day and a half. All day Saturday they basically monitored him. Took him off feeds and replaced with IV fluids. He was bradying (lower than average heartrate, which for Henry, is anything lower than 90-100) at beats from 88, 78, 58... off and on all day. His oxygen levels never baselined (and again, for Henry, are 85 to low 90s) and remained around 60 and 70 if he only breathed on room air, thus he was kept on an oxygen flow blown in the direction of his mouth. That kept it at a comfortable level. I went home that evening to have dinner with the family and take a shower.

Easter Sunday morning after midnight, the nurse and i were noticing Henry's bradys happening VERY frequently, sometimes 3 in a minute, going down to 50 BPM, and then recovering slowly. Whenever this stuff happens, Henry seems very peaceful and almost always sleeping. If you look closely, you will listen and not hear him breathing. If you are particularly observant, you can look in his mouth and most likely (but not always) notice his tongue all the way pushed back into his throat, quite literally closing off his breath. That's when you shake him awake and he'll gasp, set off a little cry, and then go back to breathing. This just KEPT happening. Paired with some other concerns, the nurse called Henry's pediatrician who came in, showed concern and called Dr. Finnerty, Henry's cardiologist. I figured worries must be important enough to call The Crew in at 3am. An echocardiogram was ordered and i sat and watched Dr. Finnerty point out the parts of the heart, even the PA Band that was put in on 2/17 to limit the bloodflow into his heart. Dr. Finnerty did not find anything different or concerning on the echo, so that only added to the mystery. Henry's bradying and low oxygen are going unexplained. He's been tested for RSV, flu and pneumonia, all negative. There is the question of reflux - why is it happening so frequently, what is causing it.

Daydreaming of calmer days....

So Dr. Finnerty and Hank's pediatrician Dr. Ruas both agreed, along with some calls to CHOP, that Henry needed to be transported back to his "old stompin' grounds." There were three options: 1) airlift, 2) ground transport coming from Elmira or 3) ground transport coming from Philly, preferable in that order. It didn't seem like option #1 was happening fast enough, and #3 is just dumb when #2 can happen. And so #2 did and Henry was packed up in his "pod" around 8:00am.

Meanwhile, i went home and broke the news to Ron. I think he was completely surprised, given the look on his face. I thought about a lot of stuff on the 25 min ride home and decided that i would go home and take some time to pack and spend quality time with the family. No need to RUSH behind the ambulance when Henry was going to arrive in comfort and care. It was Easter after all and we originally had plans to have dinner with my dad (Shirley's in FL). We changed the plans to Easter Breakfast (enjoyed at Spencer's, YUM) and Sam and i had yet to dye eggs with the kit we bought about a week ago. So i promised to do that with him after breakfast. I was able to pack slowly with thought (more than TWO outfits, thank you very much) and all four of us dyed eggs (well, Thom watched joyfully from his porch swing). It was really a nice morning. The perfect way to preclude a potentially long time away from home.

And now here i am. It's taken all day, off and on, to write this entry, and in the course of time, not a whole lot has been discovered. In fact, Henry is apparently only here to bat his long reddish eyelashes at all the pretty ladies, because he has yet to truly exhibit ALL the concerns that prompted our coming down here in the first place! He's only brady'd about three times total in 30 hours, and they've all recovered within 3 seconds. He's not refluxed at all and his oxygen saturation levels are good for him, not necessitating supplemental oxygen. The only indication that this whole trip is not a joke is this tiny cough that is still a mystery as well. There's speculation that it is related to reflux. At this point, i have no idea what they are going to do to even FIGURE OUT what's wrong, especially if there are no symptoms to show them!

So we'll see what tomorrow brings. And tomorrow's tomorrow. Beyond that, i'm not counting days. I'm just goin' with Henry's flow...

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!

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......

Pic du Jour

Where's the fire, Fireman Thom?

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.

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... :-)

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.

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.

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! ;-)