Well, it's been a week waiting for cultures, hoping for the best. We'll never really know what happened this past week but whatever it was seems to have passed. Long days, long nights made longer by a fussy, feverish baby. No time to eat or think or have a coffee break to take some time to regroup. She only wants mom.

Her feed is at 15ml/hr and although we're heading in the right direction, it seems the erythromycin has lost its efficacy. As the other antibiotics were given to treat possible sepsis, somehow the erythromycin stopped working. Right now she's only pooping when we administer suppositories, sometimes not having a bowel movement for 24 hours or more (compared to the 4-8 of the previous week). 

Her belly has been up to 49-50cm in girth at its worst. Comforting a baby who is this uncomfortable has been taxing on my patience and my positivity. 

GI is at a loss and they're trying to pitch ideas for new pro-motility drugs, most with horrifying side-effects, or little-known research. They don't want to consider trying to add magnesium (my suggestion, as magnesium is something that contributes to motility naturally) because it's never been done before or studied thoroughly. This is also the answer I get when inquiring about pro-biotics.

So frustrating.

Some small glimmer of hope-  I begin my home TPN training course tomorrow, however I feel like the only reason I'm being taught this training is because we had a sit down meeting (which came about as a result of an emotional breakdown in front of the doctor) to say we didn't feel as though a plan was in place to get us home. 

I feel the training is just a charade to make it seem as though we're heading in a direction, even if the training is useless down the road.

I feel this way because when talked to about going home they still make reference to both being on PN and being PN free (if there was a true plan in place there'd be no ambiguity), and also because they've paired me with another family who is being taught home TPN and it's usually taught one-on-one (I read this as training cost savings, and covering their losses if/when they don't actually send us home on PN). Perhaps I'm reading too much into things (I'm a classic over-analyzer) but living here for 236 days has opened my eyes a bit to how things work here, add to the fact I've always been quite adept at reading people.

As you can imagine the days and long nights are wearing on me; the arrival of winter weather has really compounded my feelings of life-lost and hampered my spirit.

Missing another of my children's birthday this month, spending my own here next month, along with the uncertainty of Christmas has me down.

 I find myself closing off and pushing people away and I apologize if I've hurt anyone's feelings; it's one of my least desirable qualities of how I cope.

Once again, we're praying for poop. Please join our plea.

I knew that Progress filled days weren't something one should get used to in these kids. 

I had seen the light at the end of the tunnel home for Christmas or at least for January and I was hopeful.

They've put the Christmas lights up at RMH and every time I see them lit it serves as a reminder that most likely we're not going to be home together as a family this year. 

Dylan's system began dumping this weekend. Well, they assume its dumping because she's lost quite a bit of weight and her little hiney is burned to the point she refuses to sit. The skin coming off in layers, blistering and raw. I've been placing the oxygen mask in her diaper to speed the healing and ease the pain which does help considerably. She stooled 12 times yesterday, all an acidic, watery pastel-green clay color with the smell of upset digestion and bile.

I'm still hopeful that it's just teething symptoms because she's irritable and chomping down on everything she sees, refusing to sleep and wanting me to cuddle all day/night.

Another variable is that instead of gentamicin we are using Amoxiclav which I think is contributing to the color, and its side effect is increased motility (read:diarrhea). The good news is that we haven't had the distention and backup we did with the gent.

TPN has a tendency to turn babies' teeth yellow (like egg yolk or a 20 year, pack-a-day smoker's) so I'm a bit apprehensive to see how they come up as well. It's astonishing how something as hard on your system can keep you alive.

At any rate, if she's not gaining weight, they'll take away our breastfeeding times and put her back on continuous feeds at a lower rate and turn her TPN back up to the volume we started at, only increased because of her size: as size/weight increases so does the volume of TPN necessary to meet growing requirements. 

The emotional bonding we've done through these feeds has been what's helped keep me going and the thought of them being taken from us leaves me hollow. 

Dylan's become used to these sessions, too and looks forward to them as much as I do. I can't bring myself to prepare for having to deny her the comfort we both need; she's older now and I worry that me refusing her requests will affect her long term. Hearing her cry for something I want to, and am instinctually programmed to give, wears on my mothering spirit.

The doctors don't make decisions on Sundays so if they make that call, it'll happen tomorrow. I will enjoy these times we get to share today that little bit extra.

Please pray that Dylan gains weight tonight and this week and that her system begins absorbing again. 

Love to all, 

hug your beautiful babies.

Great Expectations

I wake up - today's the day! The day I get to have some normalcy and lock Dylan off for two hours and take her to the house to meet "the family" at RMH- cordless, completely cordless (well, Other than her NG). I've been assured this day will come for months. Been told it's in the plans for weeks. 

Next Monday. Oh no, not today, the nurse who's project this is is away....Thursday. No, not today, the order isn't in the system... next Tuesday. No, not today, the dietician is away today and can't calculate the rates.....absolutely Thursday. Today. I'm hopeful even though I've tried my darnedest not to be.

I arrived to receive the report and it's confirmed; we're locking off today for two hours. Thank God!

She's breastfeeding three times a day, 40mls per time these days which requires one hour off continuous feeds before and after. She requires her erythro q6 before the feed by at least half an hour. Her MCT after the feed 3x a day, her Flagyl pre-feed 2x a day and iron 3x a day. Also I have to schedule pumping. She has to be locked off to cycle TPN just before the bag changeover around 5pm.

"Oh, but you can't take her off the property today, we've got to monitor her sugars." (Heel pricks and chem strips)

Oh. Ok, I guess one more day is fine.

"Actually, it might be four days before you can take her."

"Oh. Ok."

I blink back tears. It's ok, still a step forward, I tell myself.

I schedule her day out to allow for feeds, off time, meds, sleep, cycling and my pumping - no easy task. I schedule in a volunteer to come at 5:00 so that I can eat dinner at RMH. I'm doing alright. I'm dealing with the change quite well, I tell myself.

The nurse comes in at 4:00 and says "Charge says you CAN take her today, but only for an hour from 6-7:00 and you'll need to be back right at 7 to do her chem strip." 

Her off cycle is scheduled from 6-8pm.

"Okay, that works, I'll skip dinner and bring her with me from 6-7 and hopefully get leftovers!" I'm over the moon excited. My endorphins flood, I feel great and happy and so thankful.

At 5pm the volunteer shows up to watch her while I run for dinner. I apologize and say that I didn't need her because I was going on pass at 6 to the house today, a broad smile on my face. 

At 5:15 the nurse comes in and says "Charge said that you can only take her from 7-8 actually because she doesn't want her off the premises in the first hour in case her sugars plummet."

"Oh. But I just cancelled my volunteer and dinner is served in 15 mins. Also, I have to feed her at 7."

"Sorry, I guess you can take her for 15 mins after you feed her to the cafeteria or something?"

Great. We go to the cafeteria every stinking day WITH the IV pole. Also, her bedtime is usually 7:30. I feel so cheated. My heart trembles, my chest hurts, my throat has a golf ball in it.

I ask her if she can put my name on the board for a volunteer as my voice cracks. 

This was the only thing I've looked forward to all month. I bought a snowsuit, a car seat, a stroller. I even dreamt of it last night. ...I was so close.

No volunteers are available.

At 5:45 the nurse comes back in. "Oh, no volunteer came?" 

"No, there are none available. It's ok, I've probably missed dinner anyway."

"Well, I can watch her for a bit if you want to run and grab something quickly from the cafeteria."

"Thank you", I say "I need the fresh air I guess." I can't bear the thought of cafeteria for dinner; I'm not really hungry now anyway.

I put my jacket on and try to get myself out the door before I cry.

My walk back to the house consists of me trying to convince myself that things are heading in the right direction. There's no reason to cry. Things could be worse- things have been worse. Keep yourself together, Devon!

I run up to my room because I'll burst into tears the moment when everyone sees that I've come alone (I've been talking for weeks of this day).

 I cry, collect myself, fix my makeup and head to the dining room to see if there are any end trails of dinner to be found.

I sit at the table and make eye contact with one of the staff of RMH,  "I'll go get the emergency chocolate", she says. Have I mentioned how wonderful this place is?

Another houseguest (and friend) next to me holds back her tears and blinks, "if only they knew how important these milestones are to us! To them they're things to cross off a to-do list, to us they're what gets us out of bed in the morning. I'm so sorry, Devon." 

"Thank you."

The chocolate arrives as I try to numb my upset.

My husband and kids are coming tonight, all 5 of them. They'll be here in an hour.... I've been working up the energy for this weekend.

 I love them to death, I miss them dearly, but I'm afraid for their arrival. It's taking so much for me to get through my day-to-day right now I'm worried I won't be present for them while they're here. I spent an hour Tuesday morning sitting on the floor of my shower letting the water fall over me as I talked myself into getting through the day.

I worry I won't have the spare energy to parent and split up the bickering, to count to ensure all the gloves and shoes and socks are accounted for. To check brushed teeth, to listen to all of their excited stories that they're bound to fill me in on all at the same time- talking over each other and fighting to speak first. The invasion of my personal space as they climb on me when they all want hugs and kisses and attention they've been missing from me and I know they desperately need.

I know Sean needs a parenting break and I want to be able to give that to him while they're here. I want to be a supportive wife and listen and soak up all of his recent stresses and struggles with my emotional sponge and apply salve with kind words of encouragement that I know he needs to hear. 

I want to let my guard down.

What's worse, I'm more concerned for the certain low that will follow on Monday when they leave for home.  When my room is quiet at night, void of excited whispering, giggling  kids that have been told to shush a thousand times; my bed empty and I wake up alone again after four days of pleasantly crowded.

I feel guilty for the anxiety that over-thinking their visit brings and also for having anything but eagerness at the thought of them arriving. I am excited to see them, truly,  but I'm guarded, and I hate that.

This is that carnival ride you can't get off. 

So just got back from x-ray... Waiting on someone to read them. I already know what they'll find. She's full of poop. The end.
I don't need an X-ray to tell me that. I'm so frustrated, my girl hasn't slept all day and is in pain. I've finally gotten her feeds shut off so at least the pressure has stopped building. She hasn't pooped since 7am. Her veins look like a roadmap on her belly, black and popping.
GI has said they agree with my theory, surgery wants to wait until tomorrow morning's CHIRP (ChildHood Intestinal Rehabilitation Program) meeting to discuss, we're under surgery's umbrella- they have final say. That's all great and good except I'm the one who gets to console a distended miserable baby. She's vomiting and burping bile every few minutes. No sleep for me tonight and so much for my mental health break in the morning (volunteer cuddler comes 8-12).
I'm going to lose it if they try to sell me my own ideas tomorrow. I may not be a doctor but I'm pretty good at math: 11mls/hr in for 15 hours and ZERO out seems to be an imbalance to me. Then again, I'm not a doctor. #frustrated

Stones, oils, prayers

Being from the holistic background I've begun to employ some other alternative healing methods as well. I've been using moonstone and blue topaz as well as essential oils and energy healing to help improve Dylan's digestion and absorption. Of course this is received negatively and everyone here thinks I'm a lunatic.
The fact that Dylan's liver enzymes are "phenomenal" and that when they expected her liver to suffer after sepsis and her numbers barely budged, that her bowel not only improved in health, but also grew, no, nearly doubled in length (which is practically unheard of) are all being chalked up to "luck of the draw".  I just smile and nod. Sure, it's luck.
They say we'll be home around march-June. I'm working my darnedest to get us home by Christmas. The fact that we have hundreds of people focusing their prayers on us I'm sure has worked miracles.
Nay-Sayers say nay, but she's my baby and therefore I will continue. I really wish more people were open to the possibilities of combining western and eastern medicine to compliment each other's therapy plans.

Transferred from FB

Seems it's time to move into a blog. I know, I know. You've all been saying this for months. You were right. Happy?  When have I ever listened to you before? I have to find my own way. Some of my posts have been deleted by the powers that be (yes, they contained profanity but it was as tasteful as profanity gets!) and I did not have backup copies of most of them. I didn't think that mattered to me at the time of writing them but as I've been laying here the last hour I've come to realize that someday this might mean something more to me or even to her (Dylan) and I should probably* do my best to archive my thoughts. Unfortunately this means some of what I wrote is gone forever (Some posts were written on a whim from my phone, straight onto FB... Like this one now). Perhaps these lost posts will join forces with my lost colostrum and they will do great things together: passion and colostrum, one unstoppable duo. Ahem* anyway... If, for some reason, you have a copy of something I've posted that has been deleted, please let me know. Thanks. I'll set up a proper blog and begin transferring posts over one by one as I can - a lot need to be transcribed because I can't copy/paste from here. I'll let ya'll know when the boxes are unpacked and you can come take a tour.  Big love, xxx ~D

Where were we? Right. So this distended belly thing. I'm so over it. Just when I think I'm getting a handle on things, learning the parameters, getting my confidence, we're playing a different game. We've seen distention before, never has it been a sign of positive things to come. We're fairly confident that the issues the last few days are a result of a bacterial overgrowth in her intestines (right in her top dilated portion where it's slow going) that was exacerbated by the sugar in the Tylenol. We cycle overgrowth antibiotics on one week increments with every third week being a rest week. Last week was a rest week so she had no overgrowth management. She's now had two days of flagyl and things seem to be returning to "normal". Her stool is back to the farm egg yellow/orange color and her gas seems to have reduced. Her belly girth is still up but we're hopeful.  We've been approved to move up to 8mls an hour (look at us go!) and 3 breast feeds a day, they'll also begin to taper her TPN back this week if she continues to gain weight. I just did the math:
5-6 pumping sessions a day at 20 mins per session plus cleanup and labeling and storage, add 3 breast feeding sessions (add in weighing time and burping) equals 4+ hours of my day devoted to milk and feeding. Lets just say I'm getting good at rocking Dylan with my foot, pumping, eating and internetting/reading all simultaneously. As she's becoming more active and interactive it's beginning to be quite a challenge to keep her entertained in our little hospital room. I'm on constant watch for her pulling out her lines and tubes (she still managed 3 times last week for her NG). It's difficult to let her play on the floor, it's hard and cold even with a blanket. (they don't allow things on the floor, technically) Not to mention when she lays flat she throws up. When she's on her tummy her Broviac is uncomfortable, even wrapped in a yard of gauze. It's also rare when her belly isn't distended so we can attempt tummy time. I worry about her milestones like rolling and crawling because she spends so little time working on these developmental skills.  I miss being able to use the washroom without having to rush. I am so grateful to live in Canada and have the care that we are blessed to have. The estimation is that it costs roughly $5000 a day for us to be here. Her TPN alone is about $1200 per day. It's great to not have to consider these costs when making decisions about her care. I heard that in Japan it's common for people to have to choose between feeding their gastro babies TPN or food for themselves. The majority of gastro babies that need long-term care in Japan don't make it because they don't get the TPN they need (it isn't covered) and they fail to thrive. This just breaks my heart and I can't imagine having to experience that as a parent: watching your baby essentially starve to death because of the structure of the healthcare system.  I know that there are a lot of friends of ours to the south who struggle in similar situations and I feel for them and their families. I am so glad I had the fortune to be born into this great country, Canada. Having said that, there is so much waste in our system. I see full syringes of life-saving lipids being tossed out day after day, half bags of TPN drained into the sink. It's sad. When I see this I daydream that someday, there will be a world where everyone gets what they need. The realist in me realizes that the probability of that is slim to zero.

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.

Happy Gastroschisis Awareness Day! http://youtu.be/n5uujMb_hbo

I made these shirts for our family, if anyone else would like to purchase one for themselves I've added the link. This is the CHILDREN'S size that comes up, if you're wanting adults/men's/Ladies' etc. then be sure to click "see all styles" on the right side. You can customize them however you'd like.  The front says "Where there's a will, there's a RAE!" The back says "Go Dylan, GO!" with the gastroschisis green ribbon. If for some reason we end up with a profit from sales, we will donate it to gastroschisis research. http://www.zazzle.com/where_theres_a_will_shirts-235961635332060011

One step back. Dylan's been throwing up again this morning. 3 times so far. Needless to say she's not being fed today. We're a bit bummed but the good news is that she's still pooping.

I have soooo much good news to report, err write about today! Our little lady is on her second day of 1ml/hr feeds with no signs of trouble or slowing down... and... Wait for it...... SHE'S POOPING ON HER OWN!! Well, sort of, she's on erythromycin but it counts (She's been getting suppositories daily and they weren't working). She's had two awesome, pant-filling, up the back, GLORIOUS messy poops; one yesterday and one this morning! Her girth has been stable at 38cm and she's calm and happy. Oh yeah, and it's all breast milk! Here's the cherry, I get to take her outside! This is us, outside in the fresh air! You can almost see how fresh it is. I wish iPhones had scratch and sniff technology. We have our annoying girlfriend with us (that's what we call the IV pole), she wants to come everywhere with us, but still. FRESH AIR!! I can't even describe how great this feels. I have to remind myself it's not a good idea to skip while wearing an infant. I could kiss everyone I walk by! MUAH!!