Monday, August 31, 2009
Daddy begins with the "Bubbie Cheetah Hold"...ready for action...
Sunday, August 30, 2009
Friday, August 28, 2009
At the GI docs - too early for the Bubbies, they are just too tired to wake up!
TP: "We are sooo bored!"
Tyler: "I think I'll kick my leg and then..." (cont. below)
Tyler: "...eat my foot?"
Tuesday, August 25, 2009
First I must boast about Tyler taking his first steps BY HIMSELF! The other day he was holding on to the couch and I put his favorite stacking pales on the chair about 2 feet away and he just went for them! He certainly didn't know what he was doing, but he walked to them by himself! Fluke? I wondered. Again today I was challenging him and trying to get him to trust his footing and he successfully walked about three steps by himself - twice! It was just thrilling to see! I grabbed the video camera and of course he quit doing it! Doh! But we are sooo very proud of him!Okay, less exciting news: Went to the Pediatrician yesterday for the boys 1-year well checkup and immunizations - yes, technically they are 14 months, but adjusted they are really 11 months old so I'm okay with a late visit. The doctor said they are both doing well and are actually on the growth charts for their actual age! They were both 29" in length and Tyler weighed 18lbs 14oz and Parker weighed 18 lbs 7oz. Whew...they are on a roll finally! And of course Parker's head was in the 75%, which wasn't a shocker. Their shots made them VERY sad but they both quickly snapped out of the crying and seemed fine the rest of the day. I was concerned that they'd have a reaction to the live cultures, but neither ended up with even a fever - that was nice.
We discussed the chance of the boys getting Synagis shots (for RSV) again this winter and he told us that our Pulmonologist has to put the referral through because it's a respiratory virus. But he did say that the boys MUST get the Swine Flu and regular Flu vaccinations as soon as he gets them. He also suggested that John and I get both shots, but in watching the news it looks like there might not be enough to go around! I think adults in the their 40's are at the bottom of the list. We will definitely get our regular flu shots and try our best to get the other - when available!
So to share some equal Bubbie ability boasting (say that five times), the boys can do the sounds/mouth movements for "airplane", "horse", and "fish" (fish has no sound, your mouth just goes up and down - Parker does it REALLY well...it's sooo stinkin' cute)! Here are some random pics I took today of the Bubbies just playing around!
T & P: What? We didn't do anything, swear!
Friday, August 21, 2009
The buttons are a nice change from the big, cumbersome tubes that once protruded from the boys stomachs. The tubing is different for gavaging bolus and continuous feeds but I'm getting the hang of it. The biggest challenge is keeping the boys fairly still while I'm gravity tubing anything - formula or medicines. They are soooo antsy! Tyler's button area looks a little raw and the granulation tissue around the button is gross. The doctor put silver nitrate on both boys stoma areas to burn off the extra tissue - I think it hurt a bit because they both cried. ;o( I am keeping an eye on Tyler's because it always builds crusties around it. Fun huh? So after the boys recovered from the Rotavirus, both of their weights dropped drastically. Since then, both boys have gained a significant amount of weight and at the GI's check were: Parker 18lbs 1oz, Tyler 18lbs 12oz. This is exactly what the Pulmonologist wanted to see - two fat babies! Well, they're not quite "fat" yet, but we're coming up to chubby at least!
I'll have to write on the meeting with the Feeding Therapist later but I can express that we are VERY happy and feel extremely fortunate to have met her. She immediately recognized why the boys weren't eating and is developing a plan to begin reversing their non-eating habits. John and I are very excited to begin our journey to creating two eating boys!
Well, I have to hit the hay - John is working the High School dance tonight and I'm holding down the fort and feel pretty exhausted. Enjoy some pics of the boys playing today!
Parker: "Hey...don't you mess with my wipes and Diaper Genie!"
The boys have a THOUSAND toys and what do they play with...the stuff you don't WANT them to play with! That's how our Diaper Genie looks all day...on its side. And exactly what's the fun in wipes? The wrapper makes a cool crackling noise - oh joy!
Look at those eight teeth! Poor guy doesn't know what's about to hit him - a trip to the dentist! Parker is grinding and chipping his teeth - and I think they're also a little discolored. Just ONE MORE thing - good grief!
Tuesday, August 18, 2009
Sunday, August 16, 2009
Anyway, I know I was ready for a break after our last trauma and was happy to fly to Montana for my sister's wedding. I left Thursday and returned LATE Saturday night (technically early Sunday morning after a nice delay in Seattle) - just enough distance to have a small break, but miss my guys terribly at the same time. I was relieved that Velear, my future sister-in-law, volunteered to come over from the Bay Area and watch the boys. She and Katie Garland kept the boys on schedule for two days while John worked. You can't imagine how nice it was knowing that the Bubbies were in capable hands! I can't thank them enough!
The wedding was intimate and beautiful - I'd post a pic of the special event but I forgot my camera! Doh! Just as well as I became the wedding photographer and ended up taking pictures with my sister's brand new Cannon - very nice! Should I get my hands on some wedding pics, I will post them. Until then, I can tell you that it was a surprise trip - my sister had no idea that I was coming. My mother flew in and surprised her as well. We stayed at a beautiful resort in Polson Montana located on Flathead Lake. It was a quick, exhausting, and joyful trip!
When I returned I noticed that some very cute pics were saved on my camera! To lighten things up a bit, here are some random shots of boys!
Great pic of Tyler standing on his own - good job Bubbie!
Thursday, August 6, 2009
Last night (Tuesday the 4th) Heather and I arrived home from the hospital with both boys. We had all four been living there for the past six days…Tyler in the Pediatric Unit while most of Parker’s stay in the ICU. Let me digress... “Back to the beginning Viccinni…” (just a little Princess Bride quote before I recount what was one of the scariest moments of my life). Heather has already written about the surgery both boys went through to get their feeding tubes placed. While the experience that included living in the hospital for four days was exhausting and trying it turned out to be successful and relatively drama free…or so we thought. Upon arriving home from the hospital, only a few days had gone by before it became apparent that Daddy and the boys had picked up some sort of head cold while in the hospital. Mommy was lucky enough to have dodged it. I seemed to get the worst of it as it turned into a full blown and extremely painful sinus infection. The boys were exhibiting congestion, runny noses and general crankiness….I’ll take a quick tangent here as it becomes relevant in the future of the story. This is the head of the pin that we dance on - the “cold” vs. the micro-preemie.
Being somewhat educated, I understand that babies are supposed to catch little colds, it’s what helps them build their immune system - but what about the micro-preemies with chronic lung disease? Are they supposed to catch colds as well? After all we HAD to watch a video in the NICU on RSV (a nasty virus) and how it KILLS micro-preemies. Not watching the video = no taking the kids home...they were that serious about it. We had also heard about this ROTAVIRUS that was really nasty as well. So are they supposed to catch colds as part of the natural order and development of things or not? We were vigilant (some would say obsessive and wouldn’t be wrong) during the winter about keeping the boys sequestered in the house and banning almost all visitors from the house. I would shower each day when arriving home from work to avoid exposing them - we didn’t want them to wind up back in the hospital after all the time it took to get them home - and it worked. As difficult as it was, it worked - no drama during the entire winter. Come spring, our pulmonologist said to take them out and get them out in the world. We did….took them to a family gathering for Easter and BAM! instant cold - not horrible...snotty noses...lots of crankiness…but we got through. Their first birthday party in June…BAM!...instant cold - same symptoms, same annoyances, but we are all fine. Four day stay in the hospital for G-tube surgery and …you guessed it…BAM! colds. So here is where my confusion stepped in.
As the boys progressed with the colds I began wondering…when do we go see the Pediatrician? Everything I know when it comes to managing things for myself is “suck it up and deal”. Yeah, I’ve been laid out by some colds before, but you just gotta suck it up…but these are little guys…and little guys with bad lungs, still…should we be going to the doctor every time they get sick? Would we be “those” parents? Well, as it happened, we had a follow up appointment with our GI doc on Monday morning. She’ll check them out and give me the Sit Rep (that reference is for you JK). She confirms what I thought. They have colds, their lungs sound clear, and they have no temperature (note this temp thing…it becomes a biggy). Doc says feed them and love them you’re doing fine. Tuesday comes around and Parker seems to really be hurtin’. He’s had ten blow out diarrhea diapers by about 1 pm. “That parent” or not, he’s going to see the Pediatrician…something just isn’t right. 3 pm Tuesday Heather takes Parker to Doc. She informs him he’s had 12-14 diarrhea diapers already that day. 4 pm Heather gets sent to lab to pick up “poop” sample containers for us to collect specimens. 4 pm (note the time) Doc says he doesn’t have a temp and we have a tube for hydration so we’re given the green light to proceed. I spend the rest of the day and night wringing out diapers trying to get the (now annoyingly well made) little white diapers to release the liquid so I can get the samples. Wednesday…samples go to the lab and we notice Parker getting pretty lethargic. “He’s feeling like crap” I say to myself…don’t we all when we are sick. He just saw the doc less than 24 hours ago so I can’t take him in again. By Wednesday night I’m noticing that everything we put in him he is throwing up and his diarrhea hasn’t let up. My thought turns to dehydration. Okay, this is why we have the G-tube. I hook him up to receive a slow feed all night long and avoid the large feeds which are causing him to throw up. When he wakes up he’ll be more hydrated, feeling a little better and we’ll leave the slow feed on all day to combat his water loss. He’ll feel better. Still no fever so no need to panic.
Thursday morning, a morning I will never forget, I get up between 5:30am and 6:00am to Park’s faint cries over the monitor. I go in to find that he has thrown up more than once over night and has really cold hands and feet. I take him downstairs to clean him up. When I get him into the light and undo his PJ, I’m horrified at what I see. THIS is NOT the child I put to bed last night. His eyes are sunken in…his stomach is caved in and I can see all his ribs and pelvic bones…he looks just like one of those poor malnourished babies they used to show on the commercials for starving children in Africa. It had only been 36 hours since we got the green light from the Pediatrician to take him home…how the hell could this have happened so quickly? He was miserable, but he was still okay when I put him to bed 10 hours ago and certainly didn’t look like this! I wake up Heather, who grabs Tyler, only to find his head soaked and matted in his own throw up. Both boys are a mess. We get them cleaned up and know that Parker needs to be seen. If we go to the E.R. we’ll be sitting around in the waiting room for hours before getting seen. The Ped’s office opens in an hour and a half. We’ll just be on his doorstep when he arrives and demand to be seen. If Parker needs to go to the hospital, the doc can send us over without the four-hour wait in the E.R. At this point, we figured this was the best, most expedient method of getting Parker some help. We take him to the Ped’s and he is really looking bad - he’s still crying and fighting us but with very little strength. The nurse’s assistant weighs him and discovers he has lost a pound and a half in the 36 hours since he’s been here on Tuesday. While taking his temp, he continues to whimper and fight against getting his temp taken (he’s hated that since his days in the NICU) - still no temperature. Three minutes later she attempts to take his O2 levels and notices he is no longer fighting. She gets the doc immediately. What happened next is honestly the beginning of the scariest moments of my life. The doc comes in begins squeezing his chest and yelling PARKER! PARKER! He picks up his arm and lets it go….it drops like dead weight. I have been CPR and First Aid certified at least a dozen times in my life…this is the first stage of assessing a victim…establishing consciousness. Parker didn’t move. WHAT THE HELL? Why isn’t he moving? Why isn’t he fighting back? He was irritated and moving around just three minutes ago when getting his temp taken! WHAT THE HELL IS GOING ON? “KATIE CALL 911 NOW!!!” These were the next words out of the docs mouth. As my mind both raced and locked simultaneously I also heard him yell down the hall for another nurse to get in there NOW!!! Am I dreaming? Is this really happening? All that time in the NICU, all those months of complete isolation from the world during the winter, all of our progress, and there lies my son…lifeless…limp…completely unresponsive.
Three minutes ago he fought back…
Ten hours ago he looked almost normal…
36 hours ago he was right here being given the green light to go home…
WHAT THAT HELL IS GOING ON!!!!!!
In an instant there were fire fighters and paramedics crowding this tiny room. And just as suddenly he was in the ambulance lights and sirens blaring, running red lights on his way to the hospital…I was throwing things into the back of the car and following Tyler who was in a second ambulance. He was sick, but not emergent thus no lights and sirens. I arrived at the E.R., parked, and made my way into the building. I arrived to find seven people working on Parker’s lifeless limp body. I’d spent enough time in the NICU to know what to look for…the monitor…where was the monitor that would tell me what I needed to know. Found it…heart rate 200…that’s not good, not good at all. Oxygen level 97%...I glance down to recognize the all to familiar nasal cannula delivering 100% oxygen to him. I find out later that his temp went from 99 degrees at the docs office to 103. Why so many people and why is he not stabilizing? I assess the scene again and quickly ascertain that they can’t get a line in him…he’s a tough stick already, but with his severe dehydration it is making it impossible to get an IV started. Three different people are now poking him with needles desperately trying to get a life line into him…they invite me in to comfort his lifeless body…there are so many failed attempts…he looks bad…I notice his eyes rolling up into his head. “That’s not really supposed to happen is it?” I look up and notice that his heart rate is now at 250 - this is really REALLY bad…this is beginning to get desperate. A nurse looks at the doc (who I now realize has not left the area for at least ten minutes…he stands and waits…) the nurse says, “He’s really not doing well AT ALL!. He just looks at her and says, “I need a line….” Finally after what seemed like an eternity the success comes…it takes roughly fifteen minutes to get lifeline into him…very very very carefully they begin giving him fluids while continuing to poke him…they want a second line in case this one fails like all the rest. I later realized that the paramedics were trying to start an IV the entire drive over to the hospital with failed attempts. About an hour later he is finally stable…all stats look good. About five hours later they transport Parker by helicopter to U.C Davis Medical Center downtown. Brother Tyler, whose IV went in without trouble gets an ambulance ride to the Children’s hospital. The fact that Parker was taken by helicopter and not Tyler will certainly become a bone of contention in the future. Before leaving to meet up with the family downtown, I talked with the E.R. doc. I asked about two things: 1) How did this happen so quickly? The combination of the cold and what they have now confirmed to be the Rotavirus really just became a grave combination. 2) Heart rate of 250? How big is the concern about any long term damage done? He assured me that they were able to stabilize him in time and that there shouldn’t be any long term damage. “Don’t get me wrong, he was very very sick. If you had been even an hour later we would be having a very different conversation right now!” An hour later…an hour...thirty six hours earlier we were given the green light to go home!
We would spend the next six days living in the hospital. We got home late last night. Parker is about 85% back to full strength and Tyler is miserable and in the middle of it. Given his six days of IV hydration in the hospital, he should dodge the severity and lightning speed with which Parker was accosted.
Three minutes from fighting to being unconscious…
One hour from “having a very different conversation”…
Thirty six hours from “go home” to a helicopter ride…
And six days of literally living in the hospital next to the boys bedsides.
I never thought I’d here the words “Call 911 NOW!” and realize it was my son that I was on verge of losing...but on we go with the Life and Times of Tyler and Parker.
Heather: I'd like to thank those who brought us food and other useful things throughout the duration of our stay. And thank you for starting up prayer chains, "wishful" positive thoughts and white light ceremonies for the boys as well. This was the hardest thing I've ever endured. I thank John for writing this blog because I just couldn't gather enough strength to relive our tragic moment. This was a BAD one that will haunt and guilt me for a very long time.
I posted pics below.