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.