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.