Less than 12 hours

The final count down is on. In less than 12 hours Ben will be back in the operating theater for the second part of his mandibular distraction surgery.

It will be a relief to get rid of that external hardware, and the internal hardware too for that matter. However at the same time I am dreading it.

This time I am on my own. I don't have anyway to wait with. No one to distract me to keep me from watching the second hand on the clock as it seems to be stuck in the same spot.

While I know these doctors are experienced and more than capable at what they do, there is always the fear of the unknown. Any time someone has an operation there is risk, even if it is small. But lets face it...so far odds haven't meant much to us.

This is a bit earlier than what Dr. Hong had wanted to remove the device. He said the optimum time frame for the bone to ossify is 10+ weeks. We are only at 9 weeks. With all of his infections and pain, I can't help but worry what they may find when they get in there and what that will mean for Ben's course of treatment. Also there is the worry of post op infections again. Ben has been on antibiotics 8 of the 10 weeks post op already with only a few days break here and there. Every time the antibiotics were stopped the infection came back full force. It has been a nightmare and I hope this surgery will be the end of it! I worry about his breathing, I mean Pierre Robin babies are noted for breathing issues galore!! That with anesthesia can be a recipe for disaster. Nothing went wrong last time and his breathing was horrible so really the odds are not for anything happening, still given our track record I'd be a fool to dismiss it.

Then there is the feeding issues. Babies with Pierre Robin often have ongoing feeding issues. I have noticed even with just the infection that Ben doesn't take what he should at a given feed and I have to pretty much sit with him all day forcing him to eat, what he can, whenever he can. Luckily doing this until the infection started to become in control again allowed him to continue gaining weight and avoid another NG tube and pump feedings. I HOPE that his pain control is better this time and that he won't be so sleepy for so long. That his feeds can go back to normal and within a few days be home...or at least to my parents place.

I really should try to sleep but I am not sure I am going to be able to. Our room in Ronald McDonald House is in the basement, and I believe we are right below the toy area, given the thumping and banging, and other bizarre noises coming from above. Since Ben is asleep in his car seat I may take him in the bathroom with me so I can have a shower, since I believe for the first time since I arrived hours ago, the bathroom is free. The house isn't the same without our friends here. I miss Jeff and Cherlyn. This place just isn't they same without them. There was warm food waiting, and loads of friendly people, yet I wanted the comfort of a couple familiar faces and good friends.

I will try to update as much as I can tomorrow. Hopefully as things happen, since I am alone and need to keep my mind occupied so I don't end up admitted to the psychiatric ward.

T-11.5 hours....and Ben will be in the OR...Here we go again.

This is it...Surgery is TODAY...

This is it...we made it. We have survived the week.

In a little less than four hours, Ben will be taken into the OR and the start of his next journey will begin.

He is sleeping so peacefully at the minute, but I just want to wake him up, pick him up and hug him to bits. He looks so small laying on that bed I am not sure how I am mentally going to handle having him whisked away to surgery.

I managed to get some sleep last night but not a lot. I am nervous and scared for him. I wish I could be the one to do it for him.

I am assured the end results will more than make up for this, however right now I am not so sure.

I can't believe that we've made it to today, the next 12 hours are going to drag on for ever.

Today is it...SURGERY in 3.5 hours....

1 More Day....

We are one day away from the big surgery.

Today was all about getting ready. Scheduling the feeds to stop, starting IV's and blood work.

Ben's weight was up again, to 4.375kg. They also took his height for only the second time since admission. He has grown a lot and is up to 57.5 cm.

The IV looks worse than it is. Ben's arm is boarded to keep it in the right spot but makes it impossible to lay him down and keep him comfortable. The actual IV for hydration will begin through the night but at least that is one trauma over.

I went for the tour of the PICU today. At least it seems a bit quieter than the NICU. We aren't sure how long Ben will be in ICU for but we know at least a few days. As much as I don't care where in the PICU we go I am secretly hoping for the spot by the one and only window. I think it would make being in there far more bearable. I was shown where his ventilator will go along with what all the other monitors are and where his IV pumps will be placed. I was reminded he will be medically paralyzed to keep everything in place and to be prepared to find a very pale, and roughed up looking little boy tomorrow. The OR is booked from 10am to 3pm but I have already been warned it may take longer. I was given a pamphlet on the PICU rules and all the ins and outs. I was also given a parent journal to use, in it was already written the charge nurse's name that will be on tomorrow and the doctor that will be responsible for Ben in the PICU.

We are down to one day. I can't believe it is this close. The waiting is insanely hard. Part of me wants to tell them to just forget it and the other part just wants them to get it over with now. I can't quite wrap my head around just how much this is going to change Ben's life, and ours too for that matter.

1 more day....just 1 more LONG day...

2 Days.....

We are down to the last 2 days before surgery.

Not much happened today since it is a weekend.

Mostly residents came in to see if we were alright.

There was a mix up with the order entry and the concentrate that Ben's milk is being fortified with was cancelled and the floor ran out. It took over 12 hours to fix. Turns out the wrong order was cancelled and then the formula room was left trying to figure out exactly what it is we have Ben on now.

Ben's weight is up again 4.360 Kg (4360g). I wonder what he would be up to had the fortification actually been done correctly the past few days.

Tomorrow I am sure will be difficult. Watching everyone start getting Ben ready for surgery. Stopping his feeds, starting the IV's and changing him from his normal clothes to the hospital wear. Blood work has been ordered for tomorrow for blood typing. I also had to do a short questionnaire on weather Ben had blood products before, any transfusions and reactions. That kind of thing. Luckily no...and hopefully it will stay that way!

Only 2 more days...the waiting is getting to me now.

T-2 days....

4 Days...

Only 4 more days.....

Marlon the pediatric resident was in early and wrote another letter for Ashley for work.

The pediatric team was also in. Ben's skin looks much better so they felt it would be best to lower the dosage of the hydrocortisone. They have lowered it to a 0.5% concentration.

The Eucerine cream is helping is poor dry skin and will continue to be used at least twice a day.

Dr Suzedec liked my sign on the door and felt it was very appropriate given Ben's upcoming surgery.

I signed a consent for Ben to be a 'teacher' to the second year medical students. It was very rewarding to be honest. Ben and I were assigned two students and they were given the opportunity to interview us and practice there assessment skills. The doctor following the students was great and brought all the students that came to the unit in and showed them how to do a physical examination on a child who has Pierre Robin. At the end Ben received a certificate from Dalhousie University and the IWK for his fabulous teaching skills. Not bad only a little over a month old and already a certificate from a university!

Anesthesia came in at the end of the day to talk over what will go on for Ben on Monday and did his preop anesthetic assessment. Ben tolerated side lying and sitting up better than he had thought he would so that was reassuring. The doctor explained the arsenal of options he has in his medical bag to keep Ben breathing, including one that involves a special fiberoptic camera and a guide wire. He did prepare us that due to the difficult airway he may need a tracheotomy. He did stress it would be temporary and heal over very quickly. He does not plan on that happening but it is an option on the table. He also discussed all the possible side effects of the anesthetic including adverse reactions and rarely death. Having the death conversation about your child is NEVER where you want to go. No matter how unlikely it is not something you want to think about. It is very hard not to go to a dark place after hearing that. He did say we don't "plan" on that happening. I was thinking "How nice of you to not plan on killing my son!" but decided to keep my big mouth shut.

Dr. Hong stopped by and reassured me that the tracheotomy is the last plan of action and he is confident Ben will tolerate the procedure well. He and Dr Belowzy will be by again tomorrow around noon to go over all the surgical specifics and get our informed consent for our big day on Monday.

Luckily enough Ashley and Harrison are finally over their colds and were able to come back to see me this evening. We did go out for a bit and took Harrison to McDonald's. I enjoyed it so much. Unfortunately Ben managed to get his NG tube out....again! I felt so bad for Ben and I guess leaving wasn't really the best decision I could have made...even if I did need to get out for that short time.

Hopefully tomorrow won't be too overwhelming with our meeting with the surgeons. I am not going to hold my breath on that one though...

T-4 days....

5 Days

Only 5 more days....

Today has been hard. Not because anything happened so much as that everything is really starting to get to me. I haven't had proper sleep in ages, Ashley and Harrison have colds and have been in the valley since last Thursday night and I haven't left this little room (other than to accompany Ben for tests) in over a week. Needless to say the mommy is going 'round the hat rack!

The residents started early, it wasn't even 7:30am when they arrived. The ones from ENT that is. I am not really sure why but they were questioning when Ben was having his bronchoscopy and honestly they knew about as much as I did.

Some of the residents and nursing students haven nasty colds so I have been making everyone put on a mask before going near Ben.

When the resident team came in I pointed out that the rash on Ben's face hadn't improved and that I am sure it is from the linens here, since he didn't have the rash at home. A hydrocortisone cream has been ordered although to this point I have yet to see it.

The main resident, Marlin, said that Ben's surgery "should" happen Monday. This makes me wonder if there isn't some internal force at work that may delay us farther in this journey.

Dr. Suzedec was in as well and is very pleased with how little Ben is growing. She agrees that it looks like his little jaw is growing on it's own. This is a very promising sign that surgery will indeed be able to fix Ben's airway.

Ben's weight is up again today. He gained another 50g since yesterday. That puts his weight at 4240g (4.240Kg). At least we are getting somewhere on that front.

The call bell system went down shortly after lunch and I was told to "Yell REALLY loud" if there was an emergency. Not very reassuring but luckily not something I had to test.

I have also asked that a note be placed on Ben's file in regard to his NG tube. The last time the tube was pulled out the ENT people put the tube back down the same nostril. I have asked the sides be alternated (like they are supposed to be!!) the next time he needs to have it changed or it becomes dislodged. Hopefully this will help, since his cheek looks pretty red and I want it delt with before it gets sore.

Messages have been left for our main ENT doctor (Dr. Hong) and our plastic surgeon (Dr. Belowzy). We should hopefully know tomorrow when our big presurgery meeting with them is. We also should know where the vanishing letter from Dr. Hong has gone and where and when the bronchoscopy is going to be exactly.

Ben loves his ladies on the unit, and the nurses all love him. Every one of them wanted to look after him and I basically got kicked off the unit! I broke down and did as they asked and took some time to leave the unit for a few minutes. Perhaps being cooped up in this room for so long is making me a bit loopy!! I walked over to the women's site via the link building and went to the Ronald MacDonald family room and used the phone there to call Ashley. I also had a fresh cheese tea biscuit, right out of the oven. It was so good and the closest thing to real food I have seen in a while.

It may have only been 30 minutes but I needed it. Hopefully once Ashley and Harry are feeling a bit better we can all go out somewhere for an hour or two and just clear our heads.

We are getting there slowly....

T-5 days....

6 Days...

Another day down and one day closer to surgery. Only 6 more days.

Today was a normal day on the Pediatric Medical Unit. The nurse was in by 7:30am, the pediatric resident was in by 8:00am. The whole team was in to see Ben and discuss his progress. How he was doing on his medication and if the cream was helping the dry skin on his poor little face.

Feeds have continued as normal, trial by bottle first followed by top up NG feeds. I am now a pro at the feeding pump and have actually been showing the nurses a few tricks I've learned along the way. Ben is back up to taking 2 ounces or more by mouth every feed during the day. His weight continues to climb and he is up to 4.190 Kg as of this morning.

The dietitian came in and discussed a care plan. It looks like Ben is far surpassing their expectations for weight gain. We all agree to not change anything prior to his surgery. After his surgery she feels the NG will slowly be discontinued. This gives me hope that with a lot of hard work with Ben we can get him feeding and gaining weight totally by mouth and get rid of the tube within the next few months.

I have been working with Ben to help him develop his jaw muscles. The doctors have suggested a minimum of ten minutes of sucking on his bottle at his feeds, allowing him to use his soother and facial massage. I have been allowing Ben to stay on his bottle for up to 25-30 minutes if he is interested and offer his soother while the feeding pump is infusing. I am sure poor Ben thinks his mother is on drugs by the look he gives me when I try to massage his jaw and cheeks. Only 6 days.

This time next week we will be post surgery. T - 6 days....

7 Days....

We have the date. Ben's surgery is in 7 days.

The weekend was painfully slow and today has been a never ending stream of faces. Most of the information was information we have heard before...and the normal interruptions for vital checks and feedings.

Dr Hong was in and took some pictures of Ben to get ready for next Monday. It's really happening. In 7 days Ben starts his journey. I can't even imagine what he is going to go through or how scary it must be when you are that small and don't really know what is going on and why everything is happening. To see him be able to breathe comfortably and not struggle will be so wonderful, it is just everything between now and then will be hard.

I think both Ashley and I are running on empty. This has been emotionally, physically, psychologically and financially draining. I can't help but wonder how we will find the strength to keep going and provide Ben with the support he needs, but we always do. Perhaps it is better not to question where it comes from and just be glad we find it from somewhere.

T - 7 days.....7 long days....

Christmas Countdown Days Five and Six:

Day Five:

Day Six:

Christmas Countdown Day Four:

Day Four:

Christmas Countdown Day Three

Day Three:


I love this picture!!

I am sorry I am late posting this today....blogger felt the pictures needed to be rotated for some reason...I think I have it fixed now.

Christmas Countdown Day Two:

Day Two:

Yay more sparkly nail polish!!

T-22 days!!!!

Christmas Countdown Day One:

Day One:







Victoria opening the gift:







It was a cool light up Santa Minnie Pen!!




And again...


And an upside down shot of the pen...

One day down...T-23 to go!

Let the countdown to Christmas begin!

In our house we try to pack all the Christmas fun we can into the 24 days leading up to Christmas. Every year Victoria's Godparents bring her a beautiful wall hanging/countdown calender. They always go above and beyond and fill each pocket with a small wrapped gift, instead of a chocolate or a candy cane. I have decided to count down with all of you by posting pictures of what Victoria and I get to open every day :)

Since today is the second of December already I will try to catch you up by posting the past two days and then try to post the updates daily with minimal disruptions.


I decided to include some pictures of the wall hanging so you can all see what I am talking about.

The calender hanging in my hall:



Another view: