And for those of you who are curious, this is what a Broviac (that's the name brand) looks like.

Having a rough end to this week. Fever, fussy, vomiting and no poops. Her girth is slowly creeping up and she's becoming uncomfortable. She's been given Tylenol orally (normally she gets it rectally) for pain from pokes and I am wondering if this is causing the upset tummy and poop situation (sugar is a no-no for gut babies). They increased her feed to 7mls/hr and I'm praying this is not the reason. We've also changed from IV Erythromycin to oral dosage because the IV type has the side effect of hearing loss with
long-term use.

Oh, and her neck incision is healing nicely :)

Dilly has successfully tolerated 6ml/hr and is ready to head to 7mls tomorrow! She's not digesting it very well, it's pretty much shooting right through her, so that's a bit worrisome but at least it will help her liver clear the toxins of the TPN. The fantastic news is that I'm able to breastfeed her twice a day for about 5 mins. I weigh her pre and post feed and am allowed to hold her feed 2 hours and then double the hourly rate in grams (one gram=1ml) that her total feed can be. I subtract the volume she receives in TPN over the nursing time and voila! We're off and running. She's latching like a champ and is quite the protestor when I cut her suckle time short. Definite progress. :)

I managed to head home for a total of 27 hours this weekend. After a wee bit of anxiety and tears we rolled into town around 3am Saturday morning.Yes, we. Sean, being the gentleman that he is, didn't like the idea of me driving through the Park (no cell service) at midnight by myself (I'm a dreadful night driver, I fall asleep!) and so made the 8 hour round-trip to pick me up and take me home. I love my white knight *sigh*  Not a word of a lie, the first thing I did was pick weeds out of my neglected cast-iron planter (which is usually overflowing with blossoms at this time of year); It looked very Tim Burton-y. This was the first sign that time had stood still at the Chez Rae. Anyway, let me tell you, my bed is ALL that I remembered it to be, and more. So much more. Pure bliss.  A few hours after I checked out I woke up to the familiar sounds of children waking far too early for summer vacation and it was the first time that I actually enjoyed the sound. Getting out of bed was surreal as I put on what felt like a stranger's housecoat, I felt like a guest in my own bedroom. I noted the layer of dust on all of my shoes that hang on my closet organizer. I ran to the toilet to see if it was as great as I remembered but it felt small compared to the industrial-grade units I've been sitting on every morning. I walked out to the kitchen and was met by hugs from kids and I was home.  A quick call to Dylan's nurse to hear she was ok and I started to relax... I couldn't help but notice the dust. And the whiteboard calendar that was still written in my handwriting and reading March.  So I cleaned. And cleaned, and cleaned. It felt REALLY good. Also it kept my mind off
of Dylan. I only was able to attack the kitchen and living room but I felt at least somewhat better. Until I saw my garden. Eeesh. I shed a few tears, let's just say that. I don't know what I had expected, all but two of my houseplants were also "on the roof" (if you don't catch that reference, ask Sean or I to explain it sometime). I popped in to my store (shout out to From the Ground Up Organics!), and was relieved to see it looked better than I had been envisioning in my restless, sweating nightmares. Carmen and my mom (known to most by Leanna) are doing a phenomenal job holding it together without me. Huge relief, huge. I threw out a few ideas and took a tour but then had to get moving- almost lawnmower time. Sean was the star of the show (read: rodeo clown) third year running. We have the hideous (sorry, but it is) trophy to prove it. This is one of the family's traditions: watch dad get hurt at the lawnmower races while cheering him on dressed in our 77's and green attire. It's a great time and a boatload of fun year after year. Like old times. I laid low, I didn't even tell anyone I was coming to town, so the people who did scout me out were quite surprised to see me. Hugs, tears, tears and hugs and things were good. I got to put my kids to bed, kiss them goodnight and tell them I loved them, in person. It was pretty cool. In the morning I woke up (or tried) the kids individually to say goodbye and give them hugs, Braden, being my sentimental counterpart, got out of bed and cuddled on the couch with me until my ride came to take me back. That was a tough goodbye. Ugh. That kid is so like me it's scary. I got back to Calgary to find that Dilly hadn't tolerated her feed increase and had been turned back down to 5mls. Bummer. She made up for it though by giving huge welcome back smiles and kisses all the while telling me a heck of a story about what I'd missed. It was weird to have a totally bittersweet round trip; I was always leaving someone(s) with a heavy heart but always anxious to get to the end of the drive in each direction. I kind of feel torn in half, that's an accurate way to describe it.

Last Thursday we were presented with the opportunity ( ?) to test Dylan like a lab rat. Yes, they're selling it as if we've won the lottery and are extremely lucky to be chosen to further medical progress. It's a drug trial I'm forbidden to talk about in specifics but the gist is that it's untested in her category and we could break some ground - medically speaking. They emphasized how long this research study is taking due to the lack of qualifying subjects, as if this should sway my decision on its own. We're not guaranteed results, and if the results are positive we would not benefit by continuing the treatment past the six week trial (it's not a marketed product able to be prescribed). There are no "anticipated" side effects but there is a disclaimer in fine print which states that the animals tested did grow polyps and tumours. Hmmm ok. Possible short-term benefit, possible long-term side effect. I think you can see where my scale is tipping. Those of you who know me can guess what I did; I asked for a copy of every trial they had completed on said drug -adults and animals alike. She brought me an inch thick file the next day which basically said I would be killed if anyone read the contents other than myself. Then, she came by the next day to see if I had any questions, all the while assuring me there was nothing to read that she hadn't disclosed. Ummm no thanks, I'll read the studies. She said she'd return the following day for my answer...

Ok! So much has happened, where to start. My dear old (young) friend from high school came down with her girls last week and stayed a couple of nights at RMH with me. It was a very enjoyable few days full of fun and laughter. We fed the ducks at the pond behind RMH and finished up our back-to-school shopping while my volunteer (yes, I got her back, twice a week for 4 hours!) sat with Dilly. The one day at the hospital we were heading out to the playground for fresh air and as we stepped into the elevator a code blue came across the PA, saying the patient was at the west playground. I said out loud that that was where we were heading. My friend's eyes got big and she asked what it meant. I realized then that I had been desensitized. "Oh, it means somebody is unconscious." "What!?" "Yeah, cardiac arrest usually." She looked sick. "Does this happen a lot?" "Oh yeah, every few days." Security shouts at us to clear to the side as we step off the elevator. The streams of nurses and RTs and social workers begin to run by us, a stretcher, two nurses gasping saying something about going to the gym. We look through the window out to the playground and see the swarm of medical team gathered around a small body on the ground. My friend covers her girls' eyes, shielding them from the sight but really the trauma was hypothetical in our overactive adult minds. The kids just kept asking what was going on. Time slows and we hear the second page overhead, our hearts in our throats while we are frozen on the sidelines as the second wave of personnel run past, concern written on their faces. We wait at the glass, and finally the social worker (MY social worker) walks through the doors and smiles in relief. "It's a mock!" she says. "There aren't any mock parents to console so I'm off the hook." "A mock?" Color floods back into our world and our faces.  Somebody walks by and tapes a sign to the door "Training Exercise in Progress".  These are the roller coasters we ride at the hospital. Welcome to Funland.

Hey everyone! I've got a ton to write about but little Dilly's had a fussy week so when I get a chance, there will be a pile of posts. She's at 5mls/hr and so-far-so-good (other than the fussy). We won't be increased until she has a non-fussy day. Here's a pic so you didn't waste your click

Good morning :)

Those who know me know that I lead a very holistic style of life. I always have. I believe that the needs required to keep a person healthy and vital are much more than the bare
necessities. I believe there is something very real and necessary called Vitamin L. It’s the love vitamin and I feel that every living thing must have a reserve of this in their makeup to thrive. This is not a concept original to me; I didn’t come up with it. During my studies to become a holistic nutritionist, the reading and reference of vitamin L was a common thing. There is also proof that human touch releases oxytocin, the bonding hormone.  Why am I talking about vitamin L? Because I’ve spent the last 8 hours listening to a distraught little baby in the room next to ours. This tiny little prem has been inconsolable and has screamed his poor little vocal chords raw. Each nurse has taken a turn in trying to comfort and calm him only to have left defeated, fed up and exhausted because there’s nothing that he wants or nobody he will settle for. They’ve bathed him, swaddled him, turned him on his side, played music, opened the curtains, sang to him, rocked him, shushed him, swung him, given him bum pats and back rubs. They might as well be pinching him and yelling at him. He’s not sick or bored, he’s not ill in the medical sense; he’s hurting. He needs his mother. He wants to feel safe and wanted and accepted. Not by a stranger, by the person who means the most to this little boy, who he feels lost and alone and deserted - cold, without. For 6 months (he’s a prem) he’s heard nothing but the beating of his mother’s heart next to his, her voice, her warmth, her comfort. She is his world. Now he’s been left alone and hurting, confused in a stark white room, having to cry loud enough to draw attention from the hallway to receive nourishment from a hard, cold plastic nipple fed by a stranger who’s on a schedule and has a list of tasks to get back to (Nothing against nurses!).  His mother hasn’t been to visit him all week, almost nearing two. The time she visited last, she stayed for a total of 20 mins. She’s too busy, it’s too hard on her, it’s disrupted her life, parking is expensive, she lives on the other side of town. Her, her, her. I struggle every day, trying my best not to judge her. This is not a day care program! People wonder how I get up day-in and day-out, and sit for hour after hour, sometimes day after day in this hospital. Just because I have the ability to leave, doesn’t mean I have the right to stay away. Dylan’s day began today the way it always does every Tuesday and Thursday: a lab technician disturbing her cocoon of sleep at 7am, pulling out her arm without notice, tying a tourniquet and breaking skin to find a vein. Babies feel pain. I think lab techs forget that. It is so difficult to watch your flesh and blood be poked and re-poked two to three times a week as they look into your eyes crying as if to say “why do you let them do this to me, mom? I thought you loved me.” Not knowing that this is for their own good, their preservation and their progress. It takes all you have to stand back and resist the urge to snatch up your baby and run, baring your teeth at them like a feral cat, hissing in warning to back off or someone will get hurt. I can’t imagine what these babies must think of this seemingly unnecessary, evil ritual. I still worry how much of this will shape her personality and pray every day that this doesn’t create trust issues between us. I rush to cuddle her and wipe her tears and apologize for letting them do that to her. I cry at the thought of our little prem neighbour having to sort it out on his own. The most devastating part is that I’m not allowed to
comfort him. Once in a while Dylan will be sleeping and I hear him, frantic next door. Although there are volunteer cuddlers, there isn’t always someone available. While nobody is at hand to hold him except me, I am not legally permitted to touch him. My heart breaks for him and his suffering. An old friend of mine is coming to visit from Edmonton on Monday. I am so beyond thrilled to see her and reconnect. She asked me last night if there was anything I wanted her to bring, what did I need. It took me a few minutes to even think of one thing that would be nice to have, but by no means absolutely imperative to my survival- other than a hug from her, that is.


 “…And don't spend your time lookin' around
For something you want that can't be found
 When you find out you can live without it
And go along not thinkin' about it
 I'll tell you something true
 The bare necessities of life will come to you”

 -Phil Harris, Bruce Reitherman.
From The Jungle Book


To someone else, you are the world. Hug your babies.

Dylan's been doing fairly well this week with feeds, she'll be moving up to 4 ml/hr tomorrow morning.  Everything is moving through her quite well which is great, the only thing is that it makes for a cranky, hungry baby. Her stomach is emptying more efficiently a c so it has begun signaling that the little snacks she's getting are delicious but not quite hitting the spot. I haven't been able to get her to nap in the day for longer than ten minutes at a time. Unfortunately it also means I haven't been able to put her down for more than ten minutes at a time. As soon as I motion to stand to place her in the crib, or swing or play mat, she gives me the pouty lip and then breaks into full-blown hysteria. Let me tell you, that pouty lip has somehow been perfected with little practice (she yanked my heartstrings right out, first shot) and it frightens me the power she'll wield as a toddler. Once we hit 5 ml/hr we'll hold the feed for two hours, twice a day and let her have a 10ml bottle (2teaspoons!). Which will be great and horrible all at once.  "Here you go, have one lick of your lollipop and then try to forget about it." Can't wait. :/ 

She hasn't quite figured out the iPhone selfie yet. We're working on it.

We've been moved. Not moved in the warm fuzzy sense; a new room. Actually it's the room we were in for a total of 4 hours before being shuffled down a different hallway about a month ago. To charge, it's a matter of paperwork and logistics: who needs more monitoring, who is most critical and needs to be closer to the desk. To me I'm packing up my life, one reusable shopping bag at a time, carrying them all down the hallway to another wing, then placing things delicately on my windowsill, desk and institutional rolling food tray in a certain arrangement that feels the most like home. I have this down to a routine now; I'm moving furniture and testing for door squeaks within the first minutes of switching. I try to tell myself that 2113 must be our lucky number, THIS is the last time we'll switch rooms, THIS is the room we'll go home from and never look back. Look at the view! This parking lot will surely be far more interesting than the last. Oh fantastic! The new thermal on my bench/bed is a solid pink color and not that ugly blended outdated one. This is our 8th room. I've memorized this speech or a variation of it. I try to keep positive, and this gives me something to do today. A task. A glorious slot of time where I have a list of things that need doing to completion. A purpose. There are perks to changing rooms; our last room was originally one large room that was reno'd and divided into two. This meant we were number 2125-1, our neighbor 2125-2.  These are the only rooms that follow this numbering. Countless times I was woken up by neurology or hematology at all hours, men or women talking to me about Avery. "How's Avery doing?" they say. I got to the point where they would walk in and I'd say, "this is 2125-1, not 2, this is Dylan" to save the introduction prattle and forced greetings. I almost felt I knew Avery and could probably have given report. I'd know if he was having a good or bad week depending on the traffic flow. The one time I wanted to perform an experiment. To test their process so-to-speak, and I let her talk. I was fairly certain she was in the wrong room, I wasn't expecting any news. She approaches cautiously and asks how I am (man, I hate conversation that starts this way!), I say "as well as I can be" with a saccharine smile.  She tells me she works with Sandy, and that she's delivering some news on arrangements that were made. Coincidently, Sandy is also my social worker so I can keep up my charade of pretending this visit might be intended for me.  She tells me of a room they've set up, with a counsellor that I was to go to at 1:00 with my support person. She asks if I've had anymore troubling thoughts. She asks where my support person was, "oh, they left yesterday" I say. Shock is written on her face "left? As in you're here alone now?".  "Yes....." Ok, I'm in too deep. I've got to come clean. "It's just that...... Well, we thought your mother was here." "Nope, just me." "...And what about Brad?" "Who?" "Your husb..... Oh," she looks at her piece of paper and her cheeks flush with
embarrassment. I feel a twinge of guilt for having baited her this far but pretend I'm clueless. She asks my last name. She apologizes repeatedly and I tell her it happens all the time. She apologizes for interrupting my day and I wonder how the neighbor would feel to know that I now know she's going for suicide counseling just because our rooms are oddly numbered. It hits me that I now carry the weight of knowing she's on watch. I mean, I've always smiled at her in passing but now I have moral obligation to check on her. I make the mental note not to start our next conversation with "how are you".  Our new location is better. We're right next to the desk. Lots of bustling and juicy gossip, hot off the press. It's a welcome change from the service elevator hallway that was across from us before. It had loud, clanking metal doors which were opened and closed every 3 mins, 24/7. Beep! (the sound of the scanned personnel card), creeeeeeak, pause, ca-lunk lunk. One day I counted 72 times. Also, everything in a hospital has casters, usually an odd number of working ones. These things were usually what were being moved in and out of the access hallway, along with screaming kids heading to X-ray or ultrasound being wheeled in their cages... I mean, cribs. Diseases don't stop at 9pm. Yep, we're living the dream now: sunset in our window, a bathroom door which doesn't squeak, room layout which actually makes sense, and white noise primarily composed of laughter and gossip. Things are going our way.

We are holding steady at 2mls/ hr. So far so good... We need some considerable weight gain this week.

Dylan had a restless night. She was very fussy and writhing with pain. They put her on morphine to make her more comfortable and help her sleep.  It's very difficult to see your baby on morphine. You get to know your little person so well that it breaks your heart when their eyes cloud with opiate, and are unresponsive to your voice because they're in their own world- trying to navigate it with their thoughts. Limp limbs and complete apathy towards any stimulus.  You wonder if they recognize your voice. You talk/sing to them etc. for your own comfort as much as theirs. Because she was on assistance for breathing during surgery, her gut is filled with air and has put her girth up 4.5cm. Her belly is hard and distended, her veins popping out in protest at the stretch. She's been put on intermittent suction through her NG tube again to try and remove the air via stomach.
She had three episodes of bradycardia overnight where her HR dropped to 45bpm. She recovered from them on her own with no intervention. Her new Broviac looks quite good, and I'm sure will look better once the bloody dressings are changed. She is back on TPN and getting her calories and proteins etc. again. It looks like we may return to unit 2 later today or tonight. Thank you for your support everyone, it means so much. Xxx

I'm still trying to maintain the position of eternal optimist but I'm sure being tested. Dylan went in to surgery this morning at 10:30... When I hadn't heard anything by 11:45 I knew things didn't go as planned. At 12:00 I saw the radiologist in the coffee shop on the main floor so I new she would be returning from recovery any minute. I didn't dare ask him in the coffee shop because I already knew in my gut what the answer was (judging by the solemn defeated look on his face). I was determined not to cry and came up to the room where Dylan was just getting back.  They tried 8 times, 8 times! And could not get a vein. My poor girl is sedated and comfortable but her legs look like pincushions. I'm waiting now for the surgeon to come and discuss plan B. Or C, or E... whichever we're on now. I'll take all of those virtual hugs now, please.

Surgery came and decided that we'll put in a central line (Broviac, which was our original plan).  When? Sometime today. We're in surgery standby. It's kind of like a flight standby only more stressful, less-comfortable furniture (imagine that!), and less likely someone will miss their gate. Mothers kissing kids (teenagers, too) goodbye as they're wheeled away to have tonsils out, knees fixed, and appendixes removed. Tears in their eyes and stress in their hearts. God bless mothers (and fathers). We got called in at 2:30. Consent signed, ready to go.  Just a small incision, possibly have to cut into the artery in her neck, the risks are punctured/collapsed lung and anesthetic side-effects. He assures me they have a bed ready and waiting in ICU for us. Ok. Fine. Let's do this. I'm getting anxious. Our nurse leaves back to the desk. Surgeons come and go, patients in one after another. 30 mins goes by and our surgeon comes to say they're running out of anesthesiologists. He'll be right back. At 3:30 he comes back and pulls up a chair. I already know what he's about to say.  They've pushed us until later today. There's a baby in ICU with a perforated bowel. I say, "ok." He says, "really? That's it?" "No, good luck with the surgery." He says, as he lets a sigh of relief escape, "Thank you." "It's not your fault, it's your job." Besides, I happened to look over his shoulder just before he sat down. Dory helped me keep it together. "Just keep swimming...." She said. Signs like that can't be ignored. I'm grateful we are not the perforated bowel case. A little weight loss and setback is all we have to worry about in the here and now. We're hoping for 6pm... We're on standby.... I wish I had a vice to pass the time. ;)

http://lucidlyconfused.hubpages.com/hub/Being-a-Gastroschisis-Dad For the gastro fathers-to-be, this is a really well-written and inspiring story.