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....

For Auntie ACE

Peekaboo!!!

Ben wearing big brother Harry's sleeper that Auntie ACE sent.

Thank you Auntie ACE.

In Response To My Facebook Status

I updated that due to lack of sleep I have the Casino taxi number stuck in my head and repeating over and over and over and over again....

I did have a few people ask me what I was talking about (people whom didn't grow up around here in the 80s and/or haven't seen Trailer Park Boys). I decided to turn to YouTube and actually found the commercial.

Enjoy!






Believe it or not this jingle ran on CBC just a few nights ago. I was busy messing with Ben's feeding pump so I didn't notice if it was the same commercial or not. This is probably why I have been singing it (in my head) NON stop lol.

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....

More of the Same....

Today was very quiet on the unit. It was strange. The pediatric resident showed up as did the resident from ENT to make sure there were no problems with Ben's new NG tube. The nurse came in from time to time but over all it was rather quiet.

My parents were down for a visit, which broke up the day for me a bit. Believe it or not I also did laundry. There are washers and dryers on the unit, and Ben needed some things doing very badly, so I broke down and did laundry. It was nice to do something normal...even if it was laundry.

I am sure the quiet will be broken tomorrow. The parade of people will continue and there will be confusion around what Ben is having done when, where and by whom.

Fingers crossed there won't be any Monday Madness for us tomorrow.

I'm never sleeping again...

or at least not until we are home! I really did not like how last night went. Honestly I feel like I have to be awake all the time and "police" what the nurses are doing. This is the first really concerning episode since our admission last week to the PMU unit. The nurse we had was fine she just did what she felt like when she felt like doing it and it really ticked me off....One of these times I will say something to get myself kicked off the unit but Ben cannot speak for himself so I am going to!

First off this nurse was kind enough to offer to do Ben's NG feeds for me...which would have been fine except she mixed up much larger volumes of his food than needed and pumped in what she felt like he should get and not bother with what had been decided with the dietitians and paediatricians. Minor so I just told her "You know what I will just sleep between feeds, it will be fine. I will do it." Well Ben wouldn't settle after she had flushed his NG tube so she "thought" perhaps he felt warm, so maybe he had a fever and she would give Tylenol to settle him.

I made it clear that he was ONLY to get the Tylenol if he had a fever. He did not but she gave it anyway even though I asked her not to. He was not in pain, he had no fever and he settled with in a few seconds of my picking him up. I let it go. Murdering a nurse at 2 am would not have won me many friends.

This morning it was discovered that Ben had dislodged his feeding tube. ENT had to be called and over the course of an hour a room full of doctors and nurses finally got it reinserted.

Unfortunately placement was questioned. The resident wanted to pull the tube out and try again. I wouldn't allow it. Instead we went and had an X-Ray to check the NG tube placement. While exposing him to radiation isn't a good idea either I just couldn't subject him to having one NG pulled out to have it put back in and have an X-Ray after that anyway. The NG is in the right spot so all was okay.

It seems like everyday in here is a test.

Mandibular Distraction Osteogenisis

I think this video from UCLA explains Ben's upcoming surgery quite well.

**Warning this video does have a couple clips of surgery so some may not want to watch**

Woohoo

Today is a very special day. Today Ben is FINALLY above his birth weight!!!!!!!!!

Today's weight.....4025g or 4.025Kg!!!

8 pounds 14 ounces.....2 ounces above what he weighed one month and 12 days ago.

Progress....finally progress

Cat in the cockpit

Given our recent circumstances I needed a smile. My husband told me about this news story the other day and it did the trick.


Glad that wasn't my flight (sounds like something that would happen to me though)

http://ca.news.yahoo.com/cat-cockpit-causes-four-hour-flight-delay-halifax-204523481.html


Enjoy :)

Tired....

I am in need of some rest. Ben's O2 monitor alarmed off and on most of the night. When it wasn't alarming the kangaroo feeding pump was alarming. I tried very hard to rest but it just wasn't in the cards and got perhaps 2 hours of sleep total, but it was VERY broken sleep.

This morning Ben had his scope in ENT. A small camera was passed into the upper portion of his windpipe and visualized on a small TV screen. Thankfully everything looked normal and structurally we are only dealing with a small jaw and chin.

Ben will be "wait listed" for his bronchoscopy and get that sometime early next week as the OR time allows.

We are one step closer to surgery...it still doesn't seem real.

Long Day

Today was Ben's CT. It was a very long day, and honestly harder on him than it was on me.

Overnight we delayed all his feeds for 20-30 minutes so that his last feed would be around 6am. We also decided to push all the feeds via the NG tube to allow him to rest in preparation for the long day ahead of him.

At 8 am we were told that we may get to have the CT done early so to start getting Ben ready around 9:30. I dressed him in his Jonny shirt and started the NG pump with clear fluids he was allowed.

10am and nothing...we were still waiting.

11:30 Ashley called to let me know how he and Harrison were doing. I cut the call short since someone was at the door.

The resident for pediatrics was at the door with the nurse whom was less than amused. I couldn't quite grasp why she was here. She explained that (not unlike yesterday) there had been a "misunderstanding" between departments. The person booking the CT was under the impression that Ben would be allowed to be sedated and remain on his front, the radiologist however wanted Ben on his back meaning he would need to be sedated with a breathing tube, Dr. Hong wanted the CT done on his front with no sedation. Since there were not 1, not 2 but 3 different scenarios the resident wasn't sure what the actual plan was going to be. She was going to page Dr. Hong and reassess the situation in 45 minutes to an hour.

I spent the next 78 minutes calling Ashley and generally fuming over the situation. Poor Ben was originally here to gain weight. He had to this point spent over 6 hours with no food and no plan to resume feeds until someone could figure out what the heck was going to happen. Not exactly easy for him to put on weight when he can't take a feed. I mean with an anesthetic clearly he can't eat before hand but I thought all these little details (like IF he was going to be given an anaesthetic or not) should have been worked out in advance of his fast.

At shortly past one Ben's nurse returned to explain we could resume feeds and that the CT people were going to "try" the CT unsedated and with Ben on his front.

After half of a feed, we were called to the CT. Ben was swaddled and placed on his tummy in the CT machine, the little protective blanket wrapped around him so only his little head was visible. Normally parents aren't allowed in but somehow I talked my way in, and was given a very attractive protective apron. I stood on once side of the scanner, his nurse on the other. I wanted to stay close so he would know I was there and didn't leave him.

Ben was a super star. He only moved once during the whole scan and from what the techs said, they were pleased with the images.

Now the waiting game started to find out if Ben was a surgical candidate.

At 1522 Dr. Hong walked in. A small surgical instrument pack in his hand. He told me he reviewed the scan and that there was in fact enough bone mass in Ben's jaw to have the surgery!!! He showed me the device he and Dr. Belozy would be using in Ben's jaw. He also said that tomorrow he would assess Ben's upper airway in the ENT clinic and if that was okay, then the instruments would be ordered and the surgeons would start looking for some OR time over the next two to three weeks. Once a date is booked a multidisciplinary meeting will be held with Ashley and I to discuss the benefits and risks of the surgery in more detail.


This day may have been long, and frustrating, however it ended on the highest of high notes. Ben is a surgical candidate. In a few short weeks he will be able to breathe easily. At the moment it doesn't seem possible...I just hope I'm not dreaming.

Strange Day

Today was odd. At times things seemed to be happening, yet here we are at the end of the day and nothing.

Ben's procedures were cancelled, apparently schedules couldn't be coordinated. The CT in the OR "should"now take place tomorrow.

Dr. Hong made a 3 minute appearance late afternoon, and really it was useless. The bronchoscopy will be done (and I quote) "whenever".

We have been here for 5 days but it seems like forever. The anxiety waiting for these tests is killing me.

I hope my nerves last through tomorrow.

READ THE SIGN!!!!!!!!!

It feels like I go over this daily...in fact I am sure I do. Last night we had a sign put up. I have been asked 4 times in 12 hours if he can go on his back. The answer for now is still no.

Yesterday was a strange day. Things seemed to happen quickly, yet at the same time it was like nothing was happening at all. The CT and bronchoscopy are hopefully being done today. Ben took his last feed via his NG tube and the kangaroo pump around 7:30am. He will need to be put under by the anesthetist and have a breathing tube placed.

The tricky part for the staff is that Ben has to be on his tummy and the tests and surgery need to be done on his back. This is why he needs to be put to sleep and have the breathing tube placed. Even the CT will have to be done in the OR. This complicates things further as so many staff need to be present for this to take place. At the moment Radiology, Pediatrics, ENT, Plastics, Respiratory, and anaesthesiology are all trying to coordinate their schedules with an available OR to get the test and procedure done. As of right now we hope he will be going later this afternoon, but we may have to resume the feeds and try for the tests tomorrow.

On a side note Ashley and I started our education/training with Ben's NG tube last evening. We were given a home tube feed package with information and ordering numbers. This morning I, along with his nurse, did a double check for placement. Then hooked up the pump, issued the feed, gave Ben his medications via the NG, flushed the line and taped the tube back so he won't pull it out. I felt very awkward doing it, but considering it was only my first time doing it solo and only the second time total, it didn't go that badly. I am sure by the time of discharge I will be able to do it in my sleep.

Victoria Chilling Out

I can't believe how grown up she is getting...

Hard to believe she is only 9 looking at this picture!!!

Harrison at Work

This picture was taken a few weeks ago but I love it!

Harrison is playing with the laptop gran sent him from England for Christmas.

It's hard work being 14 months old!

I hate that beeping machine!!!!!!!!!

It is impossible to sleep in this place...I am getting so tired.

All night long some thing was going BEEP!

First it was the kangaroo feeding pump.

Then Ben kicked off his SPO2 monitor.

This continued ALL night long!!! One would beep then the other.

All this has done is increase my anxiety levels and prevent me from getting any rest at all. Perhaps if the parade of people isn't too bad I will try and rest once my husband gets back.....

Somehow I wouldn't hold my breath on that one ***SIGH***

Pictures of Ben

Ben getting some much needed sleep this morning (yes I know he is on his tummy but he has to be to maintain his airway due to the Pierre Robin)


Watching his fishy mobile that the nurse brought him

And again...

Ben and Daddy chilling before anything started when we first arrived here on Friday:

And Again...

I think it is starting to show in the pictures that Ben is gaining some weight...even if we have only been here a few days. Lets hope this continues!

Weight Check

Last night was a good night for Ben. The pediatrician following us at the IWK, Dr. Szudec, along with the pediatric dietitian have Ben on a high calorie diet. Right now he is on breast milk fortified with a concentrated formula. The proportion has stayed the same as what Dr. Hilliard put us on a few days ago in the valley. 100mL of breast milk and 25mL of formula.

This is just short of 4 ounces. He gets this "4" ounces every 4 hours. They want him to try and take as much from the bottle as possible and just supplement with the NG tube.

• To give him a much needed rest, as soon as Ben starts to become sleepy and has no interest in continuing to be awake we don't push him and the rest is delivered via gavage. Overnight they are allowing him to sleep and giving the total feed via the NG tube with the use of a pump.

It seems to be working. For the second day Ben's weight has increased. From what the nurse was saying it was by quite a bit as well. This is a huge relief since he needs to put on weight and continue to gain before his surgery can be done. I wish the nurse had told me what he weighed; she simply told me "It isn't good for you to be fixated on numbers, you will drive yourself crazy." Very nice nurse, very good to Ben and she knows her stuff....still I will go behind her back and ask his nurse tonight what he weighed.

Fingers crossed this continues and Ben's weight at least gets back to his birth weight over the next few days.

NG tube....Number Two....

Ben decided he no longer wanted nor needed his NG tube. While the nurse was doing his vitals his little hand yanked the NG tube out in one movement.

One nurse (who was covering for our nurse) thought it was okay for me to put another NG tube in....despite not ever being shown how, or the fact he can't tolerate being on his back AND it took a doctor and a nurse to get it in yesterday. Needless to say I told her that until he could be on his back longer than 4 or 5 seconds without his sats dropping I was NOT comfortable doing it and would not do it. I also told her I needed to be shown properly how to measure the tube, place the tube, hold Ben and so on and so forth.

In the end the ENT doctor on call, and Anaesthetist and our normal nurse came. It took all three of them to get the new (longer) NG tube in.

I think the plan is to do total NG feeds until the weight comes up a bit. I am alright with this. He needs his strength and to gain some weight so we can get his airway sorted out.

This can and probably will change again. Only time will tell

A Busy Night

Last night seemed to continue with the busy and the crazy. Ben's nurse was amazing. His name was Andrew and he honestly couldn't do enough for us. After asking all day for a correct pump kit he found the parts to make one between 3 store rooms. He found me a Medela micro steam bag to sterilize Ben's bottle. Again I had asked all day for one and no one seemed to be able to do it.

He also, like my husband and myself, questioned the reasoning for the NG tube if he wasn't going to be using it. We made our own game plan really. Perhaps that's why we like him. He said to try the feed and because he knew Ben had been through so much, he would check back on him early into the feed and if it didn't work we would gavage the rest. This would give Ben his much needed calories but still allow him to sleep. Andrew was busy ( I don't think the man stopped all night!) so he sent in another nurse to check on us. When he knew Ben was working way to hard for what little bit he got he started the gavage and let Ashley and I finish it.

Once Ben settled...he slept. Andrew made the suggestion that overnight and into the morning we would gavage feed to allow Ben a nice uninterrupted sleep. Ben could rest as long as he liked, conserve calories and still have a full feed. It was, for the first time in days, I felt relaxed. Ben had a full feed. He wasn't over tired...and he was resting and I knew even if I overslept that this nurse would be in to make sure he got his food. I really liked this nurse.

When things didn't go as planned at the 2am feed, Andrew improvised. The gavage wasn't working properly, the NG tube was too short for gravity to do it's thing. Andrew tried an extension and it didn't work so he got a pump. He made what we had work for the time being so that Ben could rest. He even stayed and helped me settle him once the pump feed was started.



The remainder of the night Andrew let me sleep and fed Ben whenever via the NG tube. I got some sleep (not much but WAY more than I have been!) and actually hope to try and wrap my head around what is going to be happening over the next few weeks.

Ben's nurse today is Sara and she seems every bit as motivated as Andrew was to allow Ben to sleep and gavage feed when he doesn't wake on his own in the given 3~4 hour window for feeds.

Lets hope that means today will be a good day.

Hanging by a thread...

That is seriously how I feel right now....that we are just hanging by a thread.

Perhaps I should start by warning you all that this is LONG. Okay not LONG but insanely LONG. We have been here for 9 hours and holy what a day. You may want to make yourself comfortable, perhaps get some tea because this is one rocky ride.

Lets rewind to yesterday....

We arrived at the shared clinics at the IWK for our follow up with the cleft palate team. This team includes a feeding team (headed by the nurse that I didn't really get on with), a plastic surgeon, an ENT and a pediatrician to name a few.

Things started off alright...mostly measurements and background about how things have been since Ben was discharged. His weight was up by a few grams...nothing enough to be excited about but at least he didn't lose. The nurse was bordering on rude. I tried my best to hold it together but lack of sleep, lack of eating and feeling rather attacked I lost it. I was crying I was so angry. While Dr. Hilliard and every other health care person involved in Ben's care has asked me the same questions this was really the first time I felt I and my parenting was being attacked. It was like she was insinuating that I wasn't feeding him...or feeding him correctly. My husband jumped to my defense but she really wasn't listening to anyone but herself.

As the morning progressed my frustration only increased. The Doctor from plastics came and talked with us from the plastic surgery point of view. Not much had changed really. His main concern was that Ben wasn't putting on weight like he should be. He actually went above and beyond and explained that babies who are born with Pierre Robin often seem to have a set back (like what we are experiencing now) around the 4-6 week mark. We are at that point now so this could be what is contributing to the poor weight gain. He could not however, explain why this is. While this does seem to explain where Ben is now it has some serious implications. Due to the fact Ben isn't putting on weight his overall growth will inevitably slow. This means his jaw will not grow as quickly as it could and will simply prolong the breathing issues. Prolonging the breathing issues will continue to complicate feeding since Ben has to work harder to eat and burns more calories than he gets in many cases. This vicious circle means that his palate surgery won't be able to happen as soon as it could because of poor growth. In other words he was supporting the insertion of an NG tube. While I was frustrated, I know this is the best solution. The pediatrician came in and said her bit but it was basically what the plastics guy had just gone through anyway. The next discussion was around admission and inserting an NG tube. While I wanted to stay and have things start moving right then and there, the pediatric medical unit was full. Arrangements for a direct admission were made for the following day (today) at 10:00am. I should make it known that I explained my rather unique situation, in the hopes that the nurse would have half a heart (and brain!) and help me work something out. My husband is going back to the UK next week, my family goes to Barbados next week. Leaving me with a sick infant and 2 other kids to care for. My concern is not about being home, but what to do should Ben need to be readmitted. The nurse was rude stating my other children could be anywhere around let alone room in. While I didn't expect them to room in with Ben I did think perhaps we could find some solution to what may happen. I should have expected this response when it was like pulling teeth for her to make sure arrangements could be made for Ashley to stay with me. I became quite upset, understandably, wanting to know what I was to do with the other kids should Ben need more care. She told me to stop worrying, to calm down and basically get over it....Can you tell I don't care for this woman!!!!!

The nurse started in again about me "calming down and stop crying" before ushering my husband, Harrison and I out the door to the ENT department. This was actually the most relaxing and overall best part of the whole visit. The ENT guys seem great. They were informative without being pushy or rude. The explanation of why Pierre Robin children get more fluid build up and have more infections was covered as were the overview of tube insertion surgery. No big deal. SOooooooo we head back to the clinic.

After returning the nurse decided to have one more go at me before we left for the day. She wanted to see Ben feed. While the breast milk was heating was when she, in my opinion, crossed a line. She told me in an attempt to save my husband and I money and added financial stress during this time, my husband should return to the UK and stay there for at least 6 months!!! To be honest not much registered after that....I was FURIOUS!!!! I then tried to get her to listen again...it still didn't work. She didn't listen to how Ben was feeding, what medications he was on, what his schedule was like, what his doctors in the valley said or anything really. As my husband pointed out I think she just likes the sound of her own voice. She followed by saying "Ben isn't a sick baby, throw your guilt out the window and be happy he isn't dying...I mean it isn't like he has cancer." and walked out!!!!!!!!!!!!!!!!!!!!! ARGH!!!!!!!! Sooo the opposite of being helpful.

The nurse came back to watch Ben feed and was very snotty and down right rude. "Oh look he does suck on the bottle" "Oh he did take his feed in under 40 minutes" "He seems to be breathing okay." I felt like screaming no Sh*t Sherlock at her but realized that wouldn't get me anywhere.

I was never so glad to leave an appointment in all my life and knowing we were coming back to be admitted made me feel sick!

Fast forward to today...

We are readmitted to the Pediatric medical unit. We arrived at 10am. Once the admitting paperwork was completed we headed up to the 7th floor of the IWK children's site.

Things stared off pretty slowly. The nurse came in, eventually, and did the nursing admission database with me. She took me for a tour of the unit. She did some basic vitals on Ben and left us too it.

A resident pediatric doctor came in and took a complete history. He also did a basic assessment of Ben and left.

The nurse brought a breast pump and my husband hunted down a pump kit for me. I called the pharmacy back home to get the dosage of Ben's medication that I forgot to bring with us and my husband and I had lunch.

Ben feed and slept as usual. Genetics came in to see us and went over the results that came back before Christmas in more depth. After they left my husband and I were wondering what was taking so long for someone to come insert a stupid NG tube!

I eventually flagged down our nurse who informed me they were waiting on the anesthesiologist before putting the tube in. I thought this was strange since the anesthesiologist wasn't present when he had the NG tube put in the NICU.

A social worker came to help us iron out any needs we may have to make our stay more comfortable. Since the nurse from yesterday hadn't found Ashley a cot, I asked if she could get him back in Ronald MacDonald house. She did. She was also able to provide us with some phone card to call home to the kids and our family that is away.

While she was here the consultant from plastics came in. He explained to us that the anesthesiologist felt Ben should be in the OR to have the NG tube placed. He also came to explain that when this is the case that the child is often looking at having mandibular distraction osteogenesis surgery in the near future. From this point on all the conversations became about surgery. Basically the distraction is a surgical procedure to lengthen the jaw and stabilizes the airway. I will explain the procedure in more depth another time. The plastics doctor continued on the he and his associate from ENT Dr Hong would be back to see us.

They came back a little later and went over more specifics regarding the procedure and the benefits of Ben having it done and having it done sooner rather than later. To see if Ben is a surgical candidate we need to have a CT scan done and a 3d mandibular reconstruction done as well as a bronchoscopy. Both will need to be done under sedation, so they will try to be arranged for the same day. That will be happening sometime next week.

Dr Hong came back a bit later with a nurse and put the NG tube in. They decided that having him in the OR was overkill since he tolerated the procedure well while in the NICU. Other than absolutely HATING the thing...Ben is doing well with it.

The next pain in the bum is that the feeding schedule has him doing what he was at home! The dietetics department have him on 3 oz every 3 hours by bottle! He is taking and has been taking that at home. They are only going to top up to 3 oz when he can't meet the 3oz per hour feeding schedule! It seems pointless for him to have that tube!

Right now I am trying to have all the information sink in to make scenes. It isn't really working.

It looks like we will be here a while....It looks like Ben will be having his first surgery soon...and he will be going through loads of tests.

I am not sure my nerves will take much more!

Readmission....

Yup that's right...Ben is being readmitted. The NG tube is happening and the visit today was a major frustration. On top of all that there were no beds available today so we have to go BACK home and then come BACK tomorrow morning!!





I am too ticked off...frustrated....upset and so on and so forth to update this properly. Tomorrow once we are settled I will update the events of today....

The "Talk"

So the appointment with Dr. Hilliard wasn't as pleasant as it could have been. She was fantastic. I am not complaining about her or her care in the least. I think she is fantastic.

What I am upset about is the reality of a feeding tube in Ben's future. We had the "Talk" around an NG tube. She just felt it would help him get over the plateau he seems to have some up against and make life a bit more stress free on the other side. I know she is right, yet I still feel guilty and like there is something more I could do.

She is going to fortify his breast milk with a concentrated formula to really up his calories. Hopefully that will help some...he was up a bit from yesterday but not enough to count.

Seriously I am freaking out about tomorrow....The nurse that runs the cleft palate clinic and I really didn't get off on the right foot in the NICU. I really hope that I will have a better experience than I think I will.

Frustration

Today marks another day of frustration. It was the start of the overwhelming set of appointments we have for Ben this week.

Ben's weight gain was non existent. Dr.Cogswell however did not seem concerned. While his weight is identical to what it was last Tuesday he has put on over a centimeter in length. The doctor reassured me all of his other growth measurements are fantastic...he just isn't putting on weight.

I am not sure there are words to express my frustration adequately. I honestly am not sure what more can do. I have increased the amount offered to Ben at every feed ( even if he doesn't take it) and I am making sure his feeds aren't spaced out too far. I wish I knew what to do.

Dr. Cogswell seems to agree with his local pediatrician that he is doing well in all other aspects other than the weight gain and perhaps a special prescription for a human milk fortifier may help to increase the calorie content enough for him to thrive and gain the much needed weight. We will be seeing his pediatrician, Dr. Hilliard, tomorrow to discuss this option.

On the plus side Dr.Cogswell felt Ben's airway management was much better and that he was very content and not as distressed as his last visit. His lungs were clear and he was able to have his second RSV injection today (right on schedule!) which was a huge relief.

Thursday we have the outpatient cleft palate team appointments. We will be seeing several doctors, surgeons and specialists along with the feeding team, and finished off with an appointment with the geneticist.

To be honest the whole situation is getting overwhelming and makes me feel more than a bit sick. The situation lends itself to making one feel like a bad parent even though no one has come right out and said that. I know it seems bad now but I can't imagine how bad it would be should he require readmission and an NG tube or worse. I know Ben will be having surgery within this next year or so and I don't know how I will mentally cope with that. I just hope this whole medical situation resolves itself sooner rather than later before Ben is old enough to remember any of it.

He is a VERY strong little boy....I honestly wish I was as strong.

Haberman Feeder

First off this bottle is a miracle for us! Ben feeds so well with it. Most people have never heard of a Haberman Feeder...I know up until I had Ben I hadn't, or if I did I don't remember it.

I love the fact that the bottle creates the suction for him (where he can't because of the cleft palate) and that he is in control of how much he gets. I also love the fact that if he is being "lazy" you can still squeeze the tip (like the squeeze feeders) so that he still gets his food (and calories!!)

Honestly I think this picture explains how it works better than I could!


And a bigger picture of the bottle/feeder:

What I DO NOT Like....THE PRICE!!!!

Last week I ordered one in from a local retailer in Halifax. After taxes one bottle cost us $42.98!!!!!!! ONE FLIPPING BOTTLE!!! ARGH!!!

On the plus side they are A LOT cheaper in the UK!!! Even with the stupid exchange rate.

Okay...I'm here...Where the heck are you?

So....after waiting over 8 months to see an opthamologist whom specializes in corneal disorders...NO ONE WAS AT THE OFFICE!!!!


Ashley and I arrived at the Coburg medical professional centre and went to suite 401 as instructed in my appointment letter. When I pushed the door open in was an empty suite with exposed wires and a pile of post on the floor! I was not impressed...and I really don't thing there are words to describe my husbands disbelief!

Anyway it turns out the office moved up the road to the Spring Garden Road Medical Centre.

I did make it to my appointment and had a less than fun procedure done...which I get to have done again in 10 weeks time.

*sigh*

I am starting to think we are being tested!!!

Oh and HAPPY BIRTHDAY LAUREN (in case I don't get to facebook or message you!)

10 is the best number!!!!!!

Ben had his follow up appointment for his weight gain today. He is up 10 grams!!!
Okay, I know that is pretty much nothing BUT it wasn't a loss!!!!

Yeah for small victories!!!!

Pierre Robin Sequence

I realize that in the past few weeks I have mentioned numerous times that Ben has Pierre Robin (pronounced “Roban”) Sequence but I have never actually explained what it is and exactly what we are dealing with.




Simply put Pierre Robin is not a syndrome or a disease. However that is were it stops being simple as it can be part of another disease or syndrome.

It is usually referred to as Pierre Robin Sequence, although it is also know as "Pierre Robin Malformation Sequence", "Robin Sequence", "Robin Anomalad", and "Cleft Palate, Micrognathia and Glossoptosis."

It is a birth condition that involves the lower jaw being either small in size (micrognathia) or set back from the upper jaw (retrognathia). As a result, the tongue tends to be displaced back towards the throat, where it can fall back and obstruct the airway (glossoptosis). Most infants, but not all, will also have a cleft palate. Ben does indeed have the cleft palate.

The basic cause appears to be the failure of the lower jaw to develop normally before birth. During the early weeks in pregnancy, the lower jaw grows rapidly, allowing the tongue to descend from between the two halves of the palate. If, for some reason, the lower jaw does not grow properly, the tongue can prevent the palate from closing, resulting in a cleft palate. The small or displaced lower jaw also causes the tongue to be positioned at the back of the mouth, possibly causing breathing difficulty at birth. This “sequencing” of events is the reason why the condition has been classified as a deformation sequence. For some, these physical characteristics may result from another syndrome or chromosomal condition. Luckily it looks like Ben's case is isolated.

Robin Sequence/Complex is rather uncommon. Frequency estimates range from 1 in 20,000 to 50,000 births, based on how strictly the condition is defined.

It is important to understand that Robin Sequence/Complex can occur by itself (described as “isolated”) or as a feature of another syndrome. Parents who have had one child with isolated Robin Sequence probably have between a 1 and 5% chance of having another child with this condition.

When Robin Sequence/Complex is observed in patients with Stickler Syndrome, Velocardiofacial Syndrome, or Treacher Collins Syndrome, genetic/chromosomal factors will influence whether more affected children will be born. Robin Sequence/Complex also occurs in children with environmentally-induced (“teratogenic”) syndromes such as Fetal Alcohol Syndrome and Fetal Hydantoin Syndrome.This is why we had to have genetic testing done at the IWK, although at the moment it doesn't seem likely that there is even a possibility of an associated syndrome.

Robin Sequence/Complex, like most birth defects, varies in severity from child to child. Some children may have more problems than others. Problems in breathing and feeding in early infancy are the most common. Parents need to know how to position the infant in order to minimize problems (i.e., not placing the infant on his or her back). For severely affected children, positioning alone may not be sufficient, and the pediatrician may recommend specially-designed devices to protect the airway and facilitate feeding. Some children who have severe breathing problems may require a surgical procedure to make satisfactory breathing possible.
The pediatrician or ear, nose, and throat specialist will also carefully monitor the baby for ear disease. Virtually all children with cleft palate are prone to build-up of fluid behind the eardrum. The placement of ventilation tubes in the eardrums may be recommended to reduce fluid build-up. Since ear infections can cause temporary hearing loss that can affect speech and language development, the infant’s hearing should also be monitored from early infancy by an audiologist.

In many patients, the lower jaw (mandible) grows rapidly during the first years of life. In some children, the jaw may grow so quickly that by the time the child is approximately four to six years of age, the profile looks normal. Children who do not experience this “catch-up” growth may require surgery on their jaws.

The cleft palate, needs to be surgically closed. The timing of the surgery depends on the child’s individual growth and development, but it is generally done at 1 to 2 years of age. Because children with cleft palate are at higher risk for delayed or defective speech development, they should be monitored by a speech pathologist throughout early childhood.

I obviously haven't gone into any great depth, especially with some of the syndromes that can be seen with PRS. Ben has been tested and will continued to be followed to make sure that this is in fact isolated PRS.

No wonder I am a nervous wreck!

Victoria and Ben

Harrison Has A Bath...

and falls asleep!! Too Cute!!

Somedays I feel like giving up!!!

Today Ben went for a follow up appointment with Dr.Cogswell. Ben has been doing well (in my opinion). He is eating and sleeping well. We haven`t had any problems managing his airway or caring for him. We have all kinds of appointments set up for him and I thought things were going well.

When Ben was weighed...his weight is down...again. I don`t know what else to do! I am already staying awake most nights so I can wake and feed him. I may order a scale to have at the house so I can monitor his weight a bit better. Obviously I am not doing so well at it at the moment. The doctor mentioned supplementing the pumped breast milk with formula.

While we will supplement his feeds, I honestly just want to cry. It is bad enough I can`t breastfeed ( in the true sense of the term breastfeeding anyway) but now to know the milk he is getting from me isn`t good enough just adds insult to injury.

I have nothing against formula and formula feeding. It just isn`t for me. Breastfeeding isn`t for everyone and that`s fine. I think it should be a choice made that is right for parent(s) and baby. I, however, did not get a choice this time and I am having a hard time getting past it.

Ben will be seen again on Tuesday for a weight check. Hopefully his weight will be up a bit. Today has been a bad day....I am trying to keep optimistic but I think my optimistic meter is broken. All I see is this ending in poor Ben having the NG tube again and even worse ending up back in hospital.

*SIGH* Here is to tomorrow being a better day!

Happy New Year!!!!