Spencer's Story

Celebrating Spencer's First Birthday

2012-09-24T15:36:00.001-04:00

The Cake that me and my sister in law to be made!

I can’t believe that Spencer is already 1 year old and the surgery is behind us! It feels like just yesterday that we got the horrible news about his condition and the need for surgery and as I sit here and reflect it is unbelievable how it all just fades away into the past. It brings back a memory of what a friend of mine (whose daughter underwent the same surgery a year ago) said to me the week of the surgery. She said, “I am happy for you that it is approaching and before you know it, it will be over and you won’t look back.” At the time I really did not understand and to be quite honest I was quite appalled at these words. I thought, how can you say this to me when my ten month old baby is about to undergo such serious surgery? How can I look forward? I just want time to stop and the date to never come. But, now sitting here on the other side of it, I get it! It is over! He is Fine! We CAN move on with our lives and celebrate his first birthday. At first I figured we would just have a small birthday party but everyone said the same thing. “You have had such a difficult first year with Spencer you have to celebrate the good times. Remember how you are feeling right now and live!” So we did. We had a full out party with food, and a music class surrounded by all our family and friends. It was truly amazing. We watched Spencer crawl around, cruise around (as he is minutes from walking) and most important have a ball at his own party, smiling from ear to ear the entire time. What a day!

The Music class with all Spencer's friends

As I look at Spencer now even I feel like even I am in a very different place then I was one year ago. One year ago I would sit and look at Spencer and fear what his life will bring. I found myself doubting his looks and as shallow as it may sound, I feared what he may look like if he continued on the path he was headed. Now, I can honestly say this worry has been wiped away with the surgery. I can truthfully look at Spencer now and say that he will be fine. He is so adorable. His eyes and smile can light up a whole room. It is amazing how many people say “oh, he is so cute.” I didn’t hear those words at all until now. People just used to comment about how much hair he had or commented on what he was wearing but now it is always, “look at him, he is so smiley, he is so precious, his smile is amazing!” What a difference. I even had someone ask me recently when he was having the surgery. I was shocked by this but said that it was in June and they were blown away. They couldn’t believe how he looks and how he is acting only 10 weeks after surgery. And the scar that I was so worried about, the reason I considered not doing the surgery, is nonexistent, buried deep in his hair and unless you really look you can’t tell at all. I sort of feel silly now for ever doubting the surgery in the first place. I trusted Dr. Philips and he is truly amazing! He did exactly what he said he was going to do and I am ever so grateful. I would urge anyone who has a child with this condition to go through with the surgery. Yes, it is hard to watch your child undergo the surgery. It is an unbelievably difficult week but wow it is worth it. Once that week is over your world will change so much just as ours did. We did this for Spencer’s future and it was definitely the right choice!

We all take for granted the small things in life, like watching our kids do the little things but I look at life a whole different way now. I think if Spencer can get through this then we can get through anything. I appreciate the small stuff now. I do try and live for every moment as you never know what tomorrow may bring.

Spencer had his first check up and although he is on the small side (the 10^th percentile) he is meeting ALL of his milestones, he is gaining weight, getting taller, starting to talk a little bit and eating like a horse. What more could we ask for? Our pediatrician is amazed at how he looks as his eye is really evening out, his nose is starting to look straighter and overall he is just such a happy baby. Such a difference from when he was an infant.

Over the next few months Spencer will have follow up ophthalmology appointments, an appointment with Dr. Philips, and continue his regular checkups but besides that we are not looking back, only forward.

Spencer at 1 year

Siblings Involved...

2012-09-14T16:56:00.002-04:00

Eidan the Big Brother

Many people have asked me what we told Eidan or how Eidan dealt with the whole situation so I will devote this blog post to him.

Our son Eidan is a very mature four year old boy. He is extremely inquisitive, talkative and outgoing and constantly asks “why or how” about everything. So therefore we knew that not only was it going to be difficult on us it was going to be equally as hard or even harder for him to understand and deal. I decided to have a conversation with our pediatrician and asked him how to handle it and he gave me the best and most sound advise which I followed to the tee. My pediatrician advised me to sit Eidan down quietly about a week before surgery and tell him a very basic story about how Spencer has a boo boo on his forehead that the doctors need to fix. Tell him that Spencer will have to spend a few days in the hospital and then will be home and all better. I then asked my doctor what to do about all the questions that I knew would follow and he told me to always keep it simple and answer the whys as they come. So this is exactly what I did. He also advised to have Eidan come to the hospital at some point in time, not necessarily to see Spencer but to know that he is there and okay. He said that sometimes when a sibling leaves for a period of time children let their imaginations take over and fear the worst. By bringing him to Sick Kids which really does not feel like a typical hospital environment Eidan will know that Spencer really is fine and will be coming home.

As I was putting Eidan to sleep about a week before surgery I told him that I wanted to talk to him for a minute. I told him in a very quiet and calm voice that Spencer has a boo boo on his head. Eidan’s response was “I don’t see one”. I said, “you may not be able to see it but it is there and the doctors are going to fix it.” He said, “okay”. He was looking at me very somberly so I continued. “That means that Spencer is going to have to sleep at the hospital for a few days and mommy will have to stay with him but after a few days he will come home and be all better. Again he said “okay” but I could see he was processing. I asked him if he had any questions. The only thing he wanted to know at that time was why I wouldn’t be here and why I had to stay with him. I was relieved because that’s an easy one to explain. I told him that his Bubbie (Grandmother) and Zaidy (Grandfather) would be sleeping here with him so he wasn’t alone and explained to him how Spencer is still a baby and needs mommy to be there and feed him. Eidan knows that I nurse him so that answered that fast. He said he didn’t have any more questions so I wiped my brow, and kissed him good night, full well knowing that it would take a day or two and then the questions would start to fly. And they did!

In the morning on the way to school the questions began. This was the conversation

Eidan: “Mommy, is it going to hurt Spencer?”

Me: "No honey he will not feel any pain because he will be taking medicine. Do you remember when you hurt your leg and mommy and daddy gave you Tylenol and you felt better?”

Eidan: "Yes"

Me: So Spencer will have the same medicine and he will be fine too.

Eidan: "That’s a good idea."

Me: "Yes Eidan, it is what the doctors do."

Eidan: "Okay that’s good because I don’t want Spencer to hurt."

Me: "That is so sweet of you Eidan, nobody wants Spencer to be hurt but we also want him to be better right?"

Eidan: "Yes we do."

Me: "Good"

Then I dropped him at school and waited until he got home to see what else he would come up with.

There were not as many questions as I thought there would be but they did continue to come. He asked things like if he would be able to hug Spencer, and if he could still play with him? He asked how long he would be gone and if he would look the same. These were all very straight forward answers and he took all the answers to heart.

The day before surgery I again had a talk with him about everything, how he would have to be a good boy and listen to Bubbie and Zaidy while mommy and daddy weren’t here. I made him a chart that we put beside his bed that had 7 days on it and told him that every night or every morning when he got up (his choice) he could put a sticker on that day and that would help him visualize how long Spencer and I would be away. He loved that as he loves stickers. So every morning when he got up and my mom went to get him, he would put a sticker down and recite how many days until Spency got home. I also made sure to put extra days just in case there were any forms of complications and we didn’t come home as early as they predicted. (We were home in 5 days which was a pleasant surprise for Eidan.)

We also made sure he had some really fun things to do as school was over for the year and he didn’t start camp for another couple of weeks. Our family and friends all chipped in and he went to movies, parks, on playdates, to the library and out to dinner so he was busy all the time and had very little time to dwell on the fact that I was away.

The night before the surgery Eidan was saying good night to Spencer as he does every night but this time he was like a little old man. Usually he just gives Spency a hug and a kiss and says “have a good sleep” but this time he took Spencer into his arms and said, “I love you Spency. I don’t want you to cry. I will miss you and soon you will be all better. You are a good boy and I will see you soon.” And then he gave him such a huge hug and kiss and said “good night”. I balled my eyes out. I was so amazed and flabbergasted at his maturity and his kind, loving words. I knew then that my little boy Eidan was really not so little anymore and probably much wiser than his 4 years.

I told Eidan how proud we were of him and how he is such an amazing big brother and how Spencer will miss him too. We hugged and kissed him and he went to sleep. What a night!

I have to admit that the first night was probably hardest for everyone. (The night Spencer was in the Critical Care Unit). I talked to Eidan on the phone a few times throughout the day and he was fine but at night my mom said that it was a little bit hard to get him to bed. He had nightmares that night that resulted in my mom giving him cookies and milk and reading stories in bed in the middle of the night, but hey, whatever works.

After that it was smooth sailing. As Spencer was recovering nicely we decided that Steve would go home, pick us up some clean clothes and put Eidan to bed and then return to the hospital. This worked well. Eidan got to spend a little quality time with Daddy and went to sleep much easier and slept through the night.

Over the weekend, my parents brought Eidan to the hospital. This was very good advice as Sick Kids Hospital is such an amazing place. It doesn’t look like a typical hospital inside. It is full of cool things to look at like glass colourful elevators, it is very bright. In one section it has a train that if you press a button runs around the room close to the ceiling. On every floor it also has a big waiting room stocked full of toys and games for every age, from infant toys to a Wii for older kids. It is truly amazing and Eidan’s eyes lit up when he saw everything there was to play with. He enjoyed spending a few hours with us. Just to clarifiy we did not let him see Spencer as this was when Spencer looked his worst. He was extremely swollen with his eyes swelled shut so we felt it would be way to scary for Eidan to see him and frankly it was difficult enough on us to deal with never mind a 4 year old. Steve and I took turns staying with Spencer and it was nice to eat a meal with Eidan and talk to him in person about everything that was going on. It was also exciting that when he came we could tell him that Spency was going to be coming home the next day and that made him very happy too.

Eidan and Spencer (6 weeks post surgery)

The last and most difficult part which I did address earlier in my blog was that of explaining to Eidan how Spencer didn’t quite look like himself. I didn’t want him to be scared of Spencer when he finally did come home. I explained to him that Spencer was fatter than he normally is, his eyes and face might be a little red, he may cry a little bit more and sleep a little bit less than he usually does but again I reassured him that Spencer is not in any pain, he is happy and healthy he just may look a little funny for a little while and that every day he will get better and better. We also told him that he needs to be a little bit more careful when playing with him as is “boo boo” is going to take a little while to heal. Eidan seemed to understand and when we did finally bring Spencer home it took Eidan a couple minutes to get used to him but after that it was as if Spencer never left. They were back to the best of friends. One very interesting thing is that Spencer had stranger anxiety even with the people he knew really well but the relationship he had with his brother did not change one bit. He smiled at Eidan as soon as he saw him even though he hadn’t seen him in almost a week. It was quite amazing. They were both happy to be back together and we were happy to be a “normal” family altogether again!

First Follow Up Appointment

2012-08-29T22:07:00.000-04:00

Spencer with his big brother, 4 weeks post surgery

On July 20^th, almost a month after surgery Spencer is doing amazingly well. He is almost completely back to himself. His sleeping at night is greatly improving, his eating is exactly the way it was before surgery it is just the napping and the strange anxiety that is left but even this is improving. Today we had our follow up appointment with Dr. Phillips at Sick Kids Hospital. Besides waiting forever the appointment was filled with happiness instead of fear for us. We knew Spencer was doing amazing and really had no concerns and this was true for Dr. Phillips as well. He examined Spencer and observed the same as us. His scar is healing extremely well, he has no infections, most of the stitches have come out and overall he is looking great. I did have a concern that in a mirror Spencer pretty much looks the same as prior to surgery. Knowing deep down that the results would really take time to see it was nice to hear that we were right in that the results would take time to see. Dr. Phillips explained that when they actually do the surgery the only thing they really correct is the forehead and open the fused suture. The rest happens on its own over time. Over the next five years he says the soft tissue will change and shape his face drastically and it WILL be symmetrical. This is comforting to know, so when he is ready for school he should be perfect which is what we were striving and the reason we went through this whole ordeal in the first place.

We do not see anyone now from Sick Kids Hospital until January for his 6 month post surgery check up. As I understand it, Spencer will continue to be watched over the next five years as he grows, not only by plastics but by the ophthalmology clinic as well just to make sure everything is developing and growing as it should be.

I will continue to post pictures and update the blog as he does grow so everyone will be able to see the progress right along with us.

My next blog post will be a special one in that I will discuss the surgery from a different perspective and that is through the eyes of my four year old son. I will explain how we told him, how he handled it all, the questions he had and so on. Please watch for that shortly and again thank you to everyone who has been reading and sending their love and support it means a great deal to all of us!

Two weeks post surgery!

2012-08-13T19:41:00.000-04:00

Spencer 2 weeks post surgery

I forgot to mention in the last blog about the drug regime we used and realized I was holding back some important information. The first day we were home I continued with the Tylenol and Advil routine every four and eight hours respectively. The next day being the Tuesday (6 days post surgery) I noticed that Spencer seemed to be having stomach issues. He began to vomit and he was eating less and that was because of all the drugs. So I consulted my pediatrician as I was worried about dehydration mostly, and he gave me some very sound advice. He told me to buy a drug called ACET which is accentually Tylenol but suppository form so that it would bypass the stomach. This helped tremendously and the vomit stopped almost immediately. After that issue it was all uphill.

The second week home was easier than I had expected. I continued to give him ACET but I wasn’t completely sure that he even needed it any more as I was noticing we were going longer and longer throughout the day without it. I decided to call Sick Kids (as they tell you to if you have any questions) and asked them if it was too soon to stop. The nurse on the phone was amazing, asked me about his recovery and advised that we should start weaning him slowly off it. She told me to keep the before bed dose and the dose first thing in the morning and drop all the others and then after we have done that for a day or two, drop the morning one and keep the bedtime one. And lastly, after another day if he doesn’t seem uncomfortable then drop the last one. By the Friday (9 days post surgery) he was off all the medication. He was in no pain whatsoever.

There were only two things that were still part of his recovery left to deal with. One being his napping and two being his stranger anxiety or “mommy-itis”. At this point he was sleeping at night in his crib, only getting up once or twice which is not so bad but naps were a real challenge. Before surgery he was napping twice a day 2 – 3 hours at a time, now he was napping 10 – 15 minutes at a time in the crib. As you can imagine it was difficult for me to deal with and I was completely exhausted from going up and down the stairs, rocking him and putting him down again and again but I wanted to persevere. He would fall asleep in the car but again only sleep for short periods of time but we were forewarned about that. Dr. Philips had told us “It is like bringing a newborn home again”. It sure was. I think I was more tired now than I was when Spencer was a newborn as he was always such a good sleeper but I knew it would pass as all the parents say it does. The stranger anxiety was also hard because he still didn’t want anyone but me. He would go to Steve (my husband) for short periods of time but even people he was completely comfortable with before surgery might as well have been strangers as they were “strangers” to him now. Funny enough though, he was always comforted by his big brother Eidan. No matter what Eidan seemed to bring a smile to Spencer’s face and it warms my heart every single time! Dr. Philips also told us this would happen as he went through such a trauma and was surrounded by strangers who poked, prodded and did this terrible thing to him and it would take him time to forget. I’m hoping this stage passes too as it would be nice for him to be himself again!

First Week Home...

2012-07-28T15:42:00.001-04:00

The first week was nothing like I expected it to be. Let me explain. I had initially hired a baby nurse to help me out for the first few days I was home. I thought this would be a really smart decision considering Steve and I had had very little sleep or rest over the last five days in the hospital and figured the only way to get any is to get some help in the house. This was a great idea but didn’t really work the way I had hoped it would. You see, I didn’t expect Spencer to be so incredibly attached to me therefore; having “help” did not in fact help at all. The doctors had warned us it would be like taking a new born home and they were exactly right. He wasn’t napping, or sleeping at night. His eating slowly came back but he preferred to nurse more often than he had been doing in the past and all this required me being with him.

The real juggling act was trying to keep Eidan occupied the whole time as well. I couldn’t do our regular running around as I wanted to keep Spencer at home. So this is where all the family and cousin help came in. We had his aunts and uncles, grandparents, friends, anyone who offered come and take Eidan out to various places like movies, parks, even just trips to the mall or grocery store just to keep him busy and not cooped up in the house. We are very lucky to have such an amazing support system around us who were willing to do whatever we needed. Without them, I can’t even imagine what would have gone on this entire time. I will talk about this again at a later time.

If you only have one child this time would be much easier, but having a very busy four year old made it all the more difficult. I admit that having the nurse in the house was helpful to get the house in order, keep it clean, do some laundry as we had been away for so long but to get a rest well it was useless.

In terms of Spencer’s recovery, at least it was going really well. It only took about 4 days for him to look like himself again with the swelling substantially coming down. He still didn’t look perfect although his forehead (that was non-existent before) was perfect. I can’t see drastic changes but I am hoping that we will over time. I do have concerns about his eyes still as they do not look even but I keep trying to remind myself that it has only been a week and these things take time. We are having a follow up with Dr. Philips July 20^th so I will make sure to ask him then, what we can expect.

Spencer's incision site

I have tried to take a picture of Spencer's incision but it is very hard to get a clear picture as he has so much hair. They didn't cut it, shave it or even touch it during the surgery which I am extremely thankful for. I thought that I would be putting Spencer in hats all summer long but as you can see there is really no need as it is barely visible unless you are actually looking for it. This picture was taken one week after Spencer's surgery.

Spencer, one week post surgery

The Canadian Jewish News Tells Spencer's Story

2012-07-25T17:44:00.001-04:00

The Canadian Jewish News has published a story about Spencer in it's latest edition out this week. We are very pleased with the article and their assistance in spreading the word and educating parents about Coronal Synostosis.

Click picture to enlarge

A list of things to bring with you to the hospital…

2012-07-16T21:56:00.000-04:00

I found that when it was time for Spencer’s surgery I had no idea what to pack, for myself or for him. When I went to the hospital to have Spencer I was given a very thorough list of what I would need for me and what you need for a new baby. How come there is no such list for bringing a child to the hospital for surgery? Not even just this specific surgery, for any surgery. I found myself calling and e-mailing the coordinator at the hospital (I probably was driving him crazy) but the bottom line is I knew I would be staying by Spencer’s side and it is not as if I live around the corner from Sick Kids Hospital therefore if there was something I needed I really wanted to have it with me. Luckily after asking the questions I pretty much had everything I needed and if I didn’t someone brought it to me over the course of the week. I think there needs to be a list and since there isn’t one I have now created one for you.

For Baby:

Diapers – First of all you don’t need to bring diapers as the hospital very graciously provides them.

(That being said I was happy that I brought some diapers with me as I favour the Pampers Swaddlers. They use the Pampers Baby Dry. The reason I liked the swaddlers especially in this circumstance was that Swaddlers have that yellow line down the middle that turns blue when the baby pees so when I couldn’t tell if Spencer was peeing at least the swaddlers could tell me he was wet which is so important.)

Wipes - The hospital also provides Wipes but again I prefer the Pampers Sensitive Baby Wipes so I was happy I had those as well. The hospital ones were very dry and I found they didn’t clean the “surprises” as well.

Onesies – I found onesies that due up down the front (you don’t want to put anything over the head for the first little while but I found I did want to get him dressed a little so the onesies worked well. I needed a whole bunch because they do get dirty. About 5 or 6 would be a good number to bring.

Sleepers – Again ones that due up down the front. I found that because it is an extremely hot summer I did not need sleepers really because the hospital was quite warm. In the winter it would probably good to bring a few maybe 3 or 4.

Clothes/ Pants – I only brought one sweat suit and that was to go home in. That was sufficient. Depending on how fast your child recovers you may want to dress him or her a day before you go home but not likely earlier than that. Again only clothes that button or have a very large head hole.

Socks – Again you don’t need many but a couple pairs are good for the baby. To make sure if it is cool then their feet will stay warm.

Blanket/Security Object - If your baby sleeps with a special blanket or has a toy that they really like bring it with as it also provides comfort to them.

Food/Bottles/Sippy Cup - If your child prefers to drink using a specific bottle or sippy cup bring it with you. They will provide bottles but Spencer was much happier when he saw his own sippy cup. I think it was reassuring to him and he drank and drank from it. They tried to give him a bottle and had no luck as he doesn’t know what to do with a bottle. In fact, they were quite surprised that a child of his age uses a sippy cup and not a bottle. I also brought one container of pureed fruit, one box of cereal, and a couple yogurts with me. He ended up not eating anything except a little bit of cereal but I was glad I brought it all with. (There is a fridge on the floor or in our case our room so we kept the food for him there and whatever we didn’t use we brought home)

Baby Soap/Shampoo – I would highly recommend bringing this with you as the hospital uses just a bar of soap which has a very strong perfumey smell to bathe them with. I much prefer a light, baby soap, like Aveeno, so it is much better to bring your own.

Pacifier – If your child uses a pacifier it is a must. They took Spencer into surgery with it and he came out sucking it. He wasn’t so attached before the surgery but after was very comforted by it.

Parents:

Let’s start with the obvious…

Underwear/Socks/Bras etc. – You obviously need these with you. Bring at least 5 days worth. If you are nursing don’t forget your nursing pads as well.

Pants/Capris/Shorts – Best thing to have is sweat/yoga type pants. You don’t need a lot I really wore the same 2 pairs of pants the whole time. I had a pair of Capri’s and a pair of long pants. That was sufficient. My husband had one pair of sweat pants and one pair of shorts.

T-Shirts/Tanks/Long Sleeve Shirts/Sweatshirts – During the day a tank top or t-shirt was fine. However, the nurses warned me that they put Polysporin in large amounts on the incision and it seriously stains clothes. And boy was she right, the stains that I had on my shirts from holding Spencer did not come out so make sure you are not wearing clothes that you care deeply for because they too will be ruined. At night, I found I was freezing, partly because I was exhausted but also I just found the temperature really dropped at night so a long sleeve shirt and a sweatshirt was well worth it. I had 2 sweatshirts, both ruined but well worth it.

Pajamas – Do not forget pj’s. You will not be doing a lot of sleeping but keeping comfortable through the night is good.

Shoes – Comfortable, easy to put on and off. You will find yourself taking them on and off all day long.

Next onto toiletries…

Toothbrush and toothpaste

Travel bottles of Shampoo and Conditioner – Each room does have its own bathroom with a shower so having your own stuff I felt made me a little happier.

Deodorant

Contacts/Glasses – If you wear contacts or glasses make sure you have everything you need for that.

Hair clips or Elastic/Hair ties – Very beneficial if you have long hair like me

Pain Meds – If you ever take Tylenol or Advil you need to bring your own. They will not supply parents with anything only the children/babies. Even if you don’t need it is better to have some on you just in case.

Other Items that are a must:

Pillow and Blanket – I brought a warm blanket and my pillow with. This was a very good move. The hospital will supply you with a sheet and a flannelette sheet but I brought a wool one which was cozy and warm. This was great especially for the night that Spencer spent in the ICU and we rested in the waiting room there. That room was particularly freezing.

Towel – They will also supply you and your child with washcloths and towels but they were small towels. I did shower every day so I was happy to have my own large bath sheet for showering.

Other Musts:

Cash – If you want to buy food most of the places within the hospital do not take credit cards so you should make sure you have cash on you. The parking lot is also cash only so make sure you have enough to cover the amount of time you are staying. (A minimum of 4 days)

Snacks and Water – We went through quite a few bottles of water as the hospital is very dry. Again there is access to fridges and freezers so if you are a yogurt eater or other small snacks I would definitely bring some stuff with as the food there can get quite expensive. Muffins, some fresh fruit were all useful especially when you don’t have a large appetite like myself dealing with all this stuff.

Books/Movies/Computer/Ipad/Magazines – Anything to occupy your time. There is a DVD player and a large TV in the room so watching movies and t.v. does help pass the time. Reading books and magazines are also good. There is also free Wi-Fi so if you check e-mail or want to go on Facebook it is available to you.

Camera – If you choose to document this journey than you will want to have a camera with you.

I think I have pretty much covered everything you will need for the hospital stay.

Monday June 25 (Day 5 post surgery)

2012-07-12T21:38:00.001-04:00

Bright and early this morning, Dr. Philips came in, 7:30 am to be exact. He caught us completely off guard but he came in to see Spencer and release him. He told us he was going into surgery at 8 so he wanted to have us released before so we didn’t have to sit around and wait all day. He once again reiterated how well Spencer was doing. He checked his incision, he checked his eyes and was pleased so he said whenever we were ready we could leave. He also told us he would be away for the next few weeks and that we wouldn’t see him again until July 20^th. Wow, I thought that was a long time from now but if that is what he was comfortable with than so was I. He gave us a script for morphine and Tylenol and told us to use them at our discretion. We packed up our things; got Spencer dressed and got ready to leave. To my surprise I was excited but yet very very nervous. Taking Spencer home meant we were now solely responsible for his well being. No one was going to be taking his vitals; no one was going to be monitoring him, only us. That seriously scared me. Would he be okay at home? Would he relapse? Would I know if he was in pain? How would I know the difference between a pain cry and just a normal “I’m tired, or I’m hungry” cry? I knew that home was much better for all of us so we said our good-byes to the nurses, our room and got in the car with Spency and headed home.

Another thing I was nervous about was how my four year old would react to Spencer as he still didn’t look like himself. He was still swollen, puffy and red. I didn’t want him to be scared by his own brother so I decided to have a very serious talk with him before he came home. I am going to write another blog all about my four year old and the whole ordeal but for now I will just say he seemed to understand that Spencer had a “boo boo” and that he was going to get better. He can still hug him and kiss him like he always does; he just needs to be a little gentler with him. I explained that he may not look exactly like he knows but that over time he will look better and better. So, we brought Spencer in and to my delight, Eidan looked a little apprehensive at first but after a few minutes they were back to the best of brothers. Phew!

Monday morning before we left Sick Kids Hospital

Saying good-bye and thank you to one of our favourite nurses, Shelley.

Sunday June 24 (Day 4 Post Surgery)

2012-07-11T22:10:00.000-04:00

I was praying and praying for Sunday to come and it was finally here. In my mind I knew that we wouldn’t see drastic changes in Spencer but I was hoping that we would wake up, his swelling would have subsided and we could forget all this ever happened. Of course, this was not the case but today we did see great improvements in Spencer. This morning the nurses came in and were very pleased to see that Spencer was a little more awake. Still not completely himself, but at least awake and eyes open. In the morning they were still very swollen and it looked like it took a vast amount of energy for Spencer to keep his eyes open due to that swelling, but he managed to do it for a few minutes at a time and that made us happy. He also seemed to be more alert, aware and even a little playful. To my amazement Sick Kids Hospital has a playroom on every floor filled with all kinds of toys, even a ton of infant toys. So Steve went there and brought a few toys back to our room and Spencer actually sat in his crib (with the rails down so it was like a big bed) and played with them. He really seemed to enjoy playing.

As the day progressed Spencer’s eyes were opening more and more. The nurses told us that they were going to give Spencer a much needed bath this afternoon and when they did, he seemed like himself. They wheeled in this stainless steel tub which was filled with nice warm water and we put him in. He loved it. He splashed around; he even cracked a little bit of a smile which warmed everyone’s heart. It was in fact a good day! Even the hospital seemed a little more relaxed today.

I found I was looking at him like Spencer again. I know that sounds weird but when your baby looks nothing like himself it is hard to think of him as yours. I don’t really know how else to describe it but seeing him play and smile helped me relax and feel more at ease. Like my Spency was coming back to me after this whole ordeal.

One thing I do have to mention though is that if you are going to be going through this please make sure you are an advocate for your child. I found as Sunday was a very relaxed sort of day I had to ask if Spencer was due for Tylenol or Advil whereas during the week all the medicines came to us on time. I found that the four hour mark would pass and then I would have to find a nurse and ask for Spencer’s Tylenol and this upset me a little as mothers have so much to remember that the meds shouldn’t be one of them but unfortunately it was a worry for me. I just didn’t want him to feel any pain (and I’m really not sure he would have if he didn’t have the Tylenol) but I didn’t want to take that chance. In every other aspect the nursing and hospital staff are truly amazing. They not only take care of the children but they also take the time to ask the parents if there is anything we needed like towels, wash clothes, sheets or blankets. They were always helpful, caring and most important they were always smiling which really makes you feel at ease. They even smiled when weighing the dirty diapers! What a place!

I also asked the nurses if they would weigh Spencer as I was very curious to know how much weight he gained in swelling. Going into surgery he was exactly 19 pounds. On Saturday he was 23 pounds and on Sunday he was 21 pounds. The weight was coming down which meant the swelling was also coming down. I also noticed today that he seriously started filling diapers. So much so that we had to change him quite often so that he wouldn’t soak through to his clothes. This was a good thing of course.

Dr. Philips came by to see us today. He said Spencer was doing amazingly well. He said he hears that Spencer is eating cereal, he’s nursing and keeping it all in therefore we would in fact be released in the morning if we were comfortable taking him home!

Yes! We are going home!

Saturday, June 23 (Day 3 Post Surgery)

2012-07-09T23:08:00.000-04:00

Dr. Phillips came to see us this morning. He checked Spencer over and said that everything was as it should be, but they are a little bit concerned about his swelling. They wanted to try a different IV to help disperse some of the swelling as it was starting to sit in places it shouldn’t. Of course, we agreed and said whatever you have to do to make sure he is okay. So a few minutes later he was given a new IV bag. Luckily he still had an IV needle in his arm so it didn’t mean any new pokes therefore Spencer didn’t even notice them changing the bag. He was still pretty much sleeping all the time so the doctors also recommended we get him off the morphine. This again scared me. I was so terrified that he would be more alert but yet in pain. They explained that the morphine is such a terrible drug and they needed to find a little bit of equilibrium as it is not good for him to be so doped up that he is not awake at all. I liked him sleeping as I knew that if he was sleeping he was not in pain and he wasn’t feeling frustrated with his lack of vision. But I also knew that the doctors know best and said that if they find he is in pain they will give him an oral dose of morphine without hesitation. I asked how they really know if he is in pain and the explained that they can tell by his demeanor and also by his heart rate. His heart rate would drop or spike depending on how he is feeling. Another sign is his blood pressure which was also being constantly measured. Obviously taking him off morphine did not mean taking him off pain killers altogether. They were going to now put him on an Advil and Tylenol regimen meaning Tylenol every four hours, and Advil every eight hours. I really hoped that this would be enough to keep Spencer comfortable and to my surprise it totally was. However, with this new drug regimen came new problems. There were so many drugs being given to him orally that it set his stomach into a downward spiral. He started to vomit every time I fed him and this upset me to no end because we were doing so great. He was nursing every four hours and he had even had a bit of cereal that morning but all these drugs put an end to that. They decided to then give him some IV gravol to help with the nausea and that seemed to work and it did allow him to keep in the next few feeds of the day.

Dr. Philips also felt that the Jackson Pratt drain would be able to come out this afternoon which they said would help Spencer feel a bit more comfortable so I was very happy with that.

After the IV was finished they said they were going to weigh every diaper from now on even if it had “presents” in it. They did this so they could see how much fluid he was losing. (Swelling is all fluid therefore they want to see him filling diapers to show that his body is starting to lose the fluid). He wasn’t doing a great job of filling diapers just yet but we were hoping that tonight he would start.

As the day progressed he did start to become a little more alert. He still couldn’t see but we could tell he was awake as he did sit up and he did respond to my voice. He would turn his head toward me if I talked to him and likewise when people would come in the room. Even though he was more awake he still would not leave my arms. I sat with him and held him even though it became hard and even painful for me at times.

The Jackson Pratt drain did in fact get removed today. They asked Steve and I to leave the room as it is not pleasant to watch. They said it was not a painful procedure but we could hear him cry for a second as we stood outside in anticipation. When we came back he was totally at ease and definitely not uncomfortable in any way so I was quite pleased. He looked better without that “thing” hanging from his head. I could also hold him better and was not so hesitant. They also decided to take all lines out except for the one. This also made him happy. At this point, because Spencer looked so big I asked if they would weigh him. They said sure so they brought in a scale. I was shocked by what they found. Spencer was 19 pounds prior to surgery and now he was 22 pounds. That was all fluid that he would need to dispell. That would be quite a feat.

The day went by quite quickly and by evening one eye had started to open ever so slightly. I was so excited. He still would not go in his crib at bedtime. Every time I put him down he would immediately wake up and try and look around. I was having such a hard time sitting in an uncomfortable arm chair. I needed some rest as I hadn’t slept since Thursday. Finally I asked the nurse if they had a chair like I had in the CCU. It was still an armchair but it was bigger and the arm rests were more comfortable to lean Spencer against. The nurse said, “Oh I don’t know what chair you had there but I can bring you a glider if you like.” I accepted and that was the absolute best thing. I could hold Spencer comfortably, put my feet up and actually get a little bit of much needed sleep.

Saturday evening Jackson Pratt Drain out and swelling subsiding a little bit

Friday June 22 (Day 2 Post surgery)

2012-07-09T22:18:00.000-04:00

*** Just a note that this page contains graphic pictures of what Spencer looked like during recovery***

Friday was a day filled with sitting, holding and waiting. Spencer pretty much slept the entire day so it was hard to see if he was swelling and if so how much. Although as the hours past, it did become clear. His eyes would be swelled shut by late afternoon for sure. This upset me so much. I must have asked the nurse a thousand times, “When will they open again? This is the worst day, right?” The nurses all answered the same thing. “The swelling usually peaks (or is at its absolute worst) around the 36 hour mark. This meant tonight at midnight we would see Spencer at his worst and this scared me beyond words. And in fact, this happened. Around dinner time, both of Spencer’s eyes had swelled completely shut and the baby that I knew and loved was no longer there. He was someone else. A giant, horrific looking baby. His eyes were red and puffy, his body was about two times the size that he normally is and it was so unbelievably hard to deal with. I cried and cried. The only solace I had was that Spencer was still on morphine and therefore he was sleeping most of the time. It was hard to tell if he was awake, when he was awake as his eyes were shut but you could sometimes tell when he was as he would sort of sit up and try to look around. I will admit that this part for me was worse than waiting while he was in surgery. This time you are literally watching your child suffer. Not in pain because he definitely was not in pain but he was frustrated and upset as anyone would be if they all of a sudden couldn’t see. He was only comforted by me at this point. No one could hold him but me. Even Steve could not console or comfort him at this time, which is totally understandable but also very very difficult. It was a struggle for me to even find time to use the restroom as this would cause Spencer to get upset. All I could do was hold him close, nurse him and let him know that I was there and not leaving him at all. I kept telling myself that Sunday would come and this whole ordeal would be over with. Sunday could not come fast enough.

Friday night - Spencer at his worst (Jackson Pratt drain still in)

Post Surgery (June 22, 2012)

2012-07-05T22:13:00.001-04:00

After sitting with Spencer for a few hours he kept trying to crawl to me or get to me so the nurses finally asked me if I wanted to hold him. My response was of course. At first I was a little nervous because of all the tubes and lines in his body but they set me up in a nice comfy chair, they organized all the tubes and they put him in my arms. It was so nice to hold him and he nuzzled his head into me and went soundly to sleep. I held him for another couple of hours and then at 7pm the nurses told us we had to leave the CCU for an hour due to shift change. We had to leave because they discuss all the cases that are in that room and due to privacy issues no one besides patients are allowed in the room. I gave Spency a kiss, put him back into bed. Luckily he didn’t get upset, he just turned onto his tummy and went back to sleep. He was very groggy as he was on a constant morphine drip. I was not happy about leaving for one hour but of course we had to follow the rules. So, from 7pm - 8pm Steve and I went to Spencer’s room on the 8^th floor and tried to relax a bit. Steve managed to eat dinner but I still did not have an appetite, I watched him eat and I drank. I knew I had to at least due this to again keep my milk supply and energy up for Spencer as the next few days were going to be extremely difficult. I watched my watch, the hour went by so slowly. I went to go pump again as Spencer was not ready to nurse and finally the hour was done.

When we came back in the nurse asked me if Spencer ever took a bottle. I sort of laughed and said no and asked why. They said that they tried to give him some water in a bottle but he wouldn’t latch on at all. They figured he didn’t like water which is actually not the case. He loves water, but he doesn’t have a clue how to use a bottle, he drinks out of a sippy cup. Luckily I brought his favourite cup to the hospital so they filled that up with water and he drank like crazy. I was so happy to see him drink but scared at the same time as I know that many people vomit after surgery. I tried to make him take it slow but he really wanted it. They told me if he kept that down than over the course of the night I can try and nurse him. I was excited about that as well. I knew he wasn’t hungry per say but I still you feel as a mother instinctually that they need to eat so I wanted to nurse him. After another few hours went (it was now midnight) they told Steve and I that we really should get some rest. The nurses promised that if he was ready to nurse they would call me either in Spencer’s room on the 8^th floor or they would call my cel. Steve convinced me that we really needed to get some rest for Spencer’s sake. So again I kissed my Spency goodnight and as hard as it was I left him. I knew he was in very good hands so I hesitantly left. I said there was no way that I was going all the way up to the 8^th floor as the CCU is on the 2^nd so the nurses told me to go lay down in the CCU waiting room which had chairs that lay down into beds and that they would call if Spencer woke up. I trusted that they would call so I put my cell phone on loud, put it by my ear and went to go lay down. To my complete surprise I actually fell asleep for a couple hours. I felt guilty for sleeping but at the same time I knew I really needed. At this point I hadn’t slept in 2 days so it was a much needed sleep. My phone did not ring so I assumed that Spencer was not ready to nurse. Finally at 5 am I got up and went back into the CCU to be with my baby. He was a little more awake and the nurse asked me if I wanted to try and feed him. So I did. He did great. He ate as he usually does and then I waited to see if he would keep it in. He did! I was so pleased. He was doing so well that they told me they were moving him to his room at 7am. They had already booked a transport. At this time they also told me they will be taking him off the morphine drip and moving to an oral or IV dose every four hours. I was a little apprehensive about that but when they explained that it is really better for him I agreed. Before they moved him they took out his catheter, one IV and one central line that he had going. They told me that the JP drain (the tube in his head) had to remain I was upset but I understood that this was very important to keep the swelling off the brain. So obviously whatever had to be done had to be done.

At 7 am exactly the crew came to move him. We settled in upstairs and began the real recovery. Spencer still hadn’t really swelled yet so I sort of convinced myself that maybe he would be the exception and his eyes wouldn’t swell shut like they say they do. Only time would tell!

Surgery Day - June 21, 2012 (Day 1)

2012-07-02T22:22:00.001-04:00

I want to tell everyone that I am going to be writing about the whole experience day by day so here is the first installment...

June 21st - Our morning began at 3:45 am. That is the time I woke Spencer up to breast feed him. I did this because the babies are not allowed to have breast milk or formula later than 4 am (4 hours before surgery). Therefore I knew if I didn’t nurse him then he would be extremely hungry and irritable come 8:00 am. I put him back to bed and he had a good sleep which made me feel somewhat at ease. I got dressed, put the last minute items in my bag and waited. Finally, 6 am hit and I went to go wake Spencer up as it was time to leave. My stomach was in knots. Poor baby had no idea what today held for him but it was probably better this way. We made our way silently to Sick Kids Hospital. The roads were eerily quiet. We pulled into the sick kids parking lot and I felt absolutely sick to my stomach. After registering and waiting, they took us into the pre-op where they weighed Spencer, they checked his blood pressure, his heart, and his temperature and then they gave us a gown to get him dressed in. The gown was actually very cute. It looked like a little karate outfit. It made me smile just for a second. This was also the time where the nurse explained how the day would go. First, Dr. Philips and Dr. Drake would come out and talk to us then an anesthesiologist would come, make sure we had no other questions and then she would take him. They explained that literally a minute after he is taken from us he would be out. My biggest fear is that he would scream when they took him from me. Luckily, this was not the case. Steve and I were crying but the nurse who took him was wearing a really colourful head covering and he was engaged with that therefore he went through the doors to the OR smiling. I on the other hand almost passed out. I was feeling so sick that I almost wanted to run back and say “forget it, I changed my mind, I love him as is” but deep down I knew that this was going to be hard but also the best thing for him and his future. Then the real waiting began.

Spencer 10 minutes before surgery

What were we going to do for the next 5 or six hours? We first went into the surgical waiting room, where you register your cell phone numbers so that if any questions come up (which you hope they don’t) they can reach you. They also give you a code, Spencer’s being Ka, S. They told us that there are boards in a number of places in the hospital where you can check on the surgery’s progress. For example, it says “In Waiting” or “In OR” or “Parents please come to surgical waiting room” or “In Recovery”. I watched Spencer’s name go round and round and it felt like it went on forever. I also took this time to go pump so that I would keep my milk supply up for him. This was difficult for me as I have never pumped before. I had to put my inhibitions aside and do this for him as well. The nurses were amazing about this, giving me a private room, with a TV , a pump and stickers with Spencer’s name on it, so that they know whose milk it is and what day and time it was pumped.

I tried to read, I tried to play the iPad but really nothing was really helping the time pass. It did eventually pass and then at the 4 and a half hour mark Spencer’s name completely disappeared and this scared the daylights out of me. Why did his name go off the board? It didn’t say in recovery, it didn’t say parents come to waiting room. It just vanished. So Steve and I got up to get ready to run towards the other waiting room when my cell phone rang. It was the surgical waiting room asking where we were as the surgery was finished! I told them exactly where we were and as we were heading to the special waiting room we were met in the hallway by Dr. Philips. He said “the surgery was a great success. There were no surprises and no problems and I don’t foresee any in the future.” As he said these words we saw Spencer being wheeled out of the OR and straight to the CCU (Critical Care Unit) as is the common practice for this particular surgery. That is why his name disappeared off the board. He does not go back to recovery he goes directly to CCU. We were then told we would be able to see him in 20 minutes after they have woken him up and got him settled into his room. A huge weight was lifted off my body immediately. But I still didn’t feel completely at ease. I needed to see him. Dr. Philips told us that this time will be the best time to see the results of the surgery as the swelling will not happen probably until morning. We quickly collected our stuff like the book I attempted to read, the computer Steve was watching some show on and we walked over to the CCU waiting room which was much nicer than where we had been the whole day. Anyhow, there again we waited. We waited, and waited. 20 minutes went by, then 30 then 45. I started to worry again that maybe something went wrong, or that they couldn’t wake him up. After an hour I was a complete wreck and I made Steve go ask a nurse what was happening. They gave us a number to call and we found out he was in fact fine but that they were moving someone else from a surgery into his room and had to wait for that person to be settled in as well. Another 10 minutes and we got the call that we could go in. Spencer looked amazing. Like a new baby. His forehead was perfect, his eyes were perfect. He was groggy and sleepy but he knew my voice the second I walked in the room. I knew this because he looked right at me and tried to crawl towards me. I was so happy. I cried! He looked peaceful. Not as scary as I thought. The scar was barely visible as he has soooo much hair and they didn’t touch it at all. I don’t know how they even sutured it up like that but they did and they did an amazing job. The only thing really disturbing was the tube that he had in his head which is called the JP or Jackson Pratt drain which helps keep the swelling off the brain. I knew this would be there but still it is very different when you actually see it hanging off your child’s head. Again, I knew it needed to be there and frankly I got used to it. He also had a number of IVs which were obviously keeping him hydrated and a catheter. The nurse explained the reason for this was to monitor his fluids, his intake and output.

It was now, 2:30pm which felt like midnight. Seeing that Spencer was pretty much sleeping Steve and I decided that I should pump again and go to the 8^th floor and see if he had been assigned a room yet. To our amazement, he was already assigned a room therefore while I pumped Steve went and got our overnight bags and got settled into what would be our home for the next 5 days.

After I was done pumping I went back to CCU and just sat by Spencer’s side for the next few hours.

Update

2012-06-28T15:21:00.000-04:00

First, I want to thank everyone for the phone calls, e-mails, texts, and BBMs. Knowing that we were surrounded by family and friends made this whole thing easier. The outpouring of support and love was truly appreciated and it is what really got us through this most difficult time. I wanted to write and let everyone know that Spencer is home. He is doing great. He is on very little pain killers, he's eating, he's happy and we are past the worst of it. He is still swollen but looks a million times better than he has in the past 4 days.

I am going to be going back now and writing about each day and what the obstacles were that we faced, including the surgery day itself. I will also be creating a link shortly to a slide show with pictures so that everyone can see what each day brought and how we dealt with it.

Again, thanks for reading and following...

Post Surgery Day One

2012-06-23T00:10:00.003-04:00

I wanted to give everybody a short update on Spencer's recovery. His swelling has progressed throughout the day. He spends most of his time comfortably resting and sucking on his pacifier.
It has been a day full of highs and lows. He is drinking and peeing, which are good signs post op. However, the anesthesia is wearing off and he is vomiting intermittently. Spencer has also been moved from a constant morphine drip to an oral dosage every four hours.

The swelling is supposed to peak by midnight tonight (36 hrs post op) which we are definitely seeing, and I hope that it will start to subside, even a little overnight.

He is getting tremendous care from all the staff here at Sick Kids, especially the nurses. They are always smiling and comforting – even when they have to weigh "the presents" or dirty diapers which they do to monitor his output. They also take amazing care of the families and parents as they play a very key role in a child's recovery.

I will post another update as soon as I can.

We will also be posting some pictures soon on a separate page within the blog to document the entire journey from surgery to recovery and beyond.

Out of The Woods

2012-06-21T12:43:00.000-04:00

I'm happy to report that Spencer is out of surgery. Dr. Phillips just came to tell us he did great. There were no problems and he doesn't anticipate any. Now we just deal with recovery. He tells us that he is no more fragile and if he wants to be picked up we can and treat him as we normally would. He is in ICU now and we will be able to see him in 15 minutes. Dr. Phillips also went on to say that we should see nice differences right away as he is not swollen yet. He will likely swell overnight but right now he looks most like himself. I'm anxious to see him and will post pictures as soon as I can.

An Amazing Letter From a Dear Friend

2012-06-21T09:53:00.002-04:00

(This is Alana)

Last night at about 9:30 pm my doorbell rang. I wasn't expecting anyone and to be honest was so busy running around that I was sort of annoyed that someone was at my door. I figured that maybe it was a door to door salesman as we do get a lot of those. Needless to say it was not a salesman but one of my bestest and oldest friends Heidi. She had come to send her love and give me a letter to read while Spencer was in surgery. The letter was so incredibly powerful and amazing that I had to share it right now. (And frankly it has given me something to do to take my mind of this horrendous waiting)

So here goes...

The risks are low, but the stakes are high.
The expectation is perfection, yet the anticipation brings frustration.
The waiting is the hardest part, yet you know it will be all worth it in the end.
Today marks the first big steps on a journey that began 10 months ago.
It all began with uncertainty...why, what and how?
Over time, the answers slowly became clearer.
We know the what and the how, but the why is forever a mystery.
I think the why is because Spencer is special.
It takes a certain kind of person to be able to make their way through life while facing difficulties and thanks to your selfless decision, and putting fears aside, Spencer will hopefully have fewer difficulties to face.

The skilled hands at work will correct what nature failed to complete. Their expertise will be obvious once the scars have healed. It will all be worth it.

I'm sure you've cried a thousand tears. Tears from fear, tears from anger and tears from uncertainty. But just remember that by shedding those tears, you may have spared Spencer from shedding some of his own, at the hands of cruel and mean children and even adults. Your tears, mean less for him. Well done!

I am proud of the decision you and Steve have made to do this for Spencer and although this waiting is killing you both, you will be thankful and happy when it's all done. When the doctor finally emerges and comes to tell you that everything was perfect, the weight of the world will be lifted from your shoulders. It's a hard burden to carry for 10 months. It's a lot of heavy emotions and confusing feelings to deal with, but alas, they are soon to be over and hopefully, never thought of again.

My whole life's philosophy has been that everything happens for a reason. And when struck with adversity , it is hard to swallow those words, and not ask why. G-d only gives us as much as we can handle. You, Steve,Eidan and both your families are more than strong enough to help Spencer make a speedy recovery and go back to being his playful, happy self.

We will be thinking of Spencer and all of you today, and sending good vibes your way.

We're here if you need anything, just call, e-mail, tweet, text, or BBM...you're bound to reach us one way or the other :)

Heidi, Brian, Joely and Arley <3

Surgery Today

2012-06-21T06:33:00.002-04:00

Sick Kids Hospital, Toronto

Good Morning. Today is Spencer's Surgery. My name is Geoffrey Vertlieb and I am Alana's Brother. I will be guest blogging today, keeping you updated as the day progresses.

6:30 am
Finally all checked in at Sick Kids Hospital. Waiting for PreOp. Surgery is scheduled for 8:00 am.

7:00 am
Spencer is in a PreOp Bay getting changed and having vitals checked.

8:00 am
Spencer has been taken into Surgery. He went in smiling.

To Participate or Not?

2012-06-12T13:10:00.000-04:00

When I went for Spencer’s pre-op appointment I was confronted with a question and now I am posing it to you my readers. Sick Kids Hospital is conducting a research study on a drug called TXA or Tranexamic Acid. This drug is routinely given by surgeons and anesthesiologists intraveneously to decrease blood loss during surgeries. TXA or Tranexamic Acid is a safe drug. In many studies there have been no serious complications. It is used in all types of surgeries including open heart and lung surgeries with no serious problems proven to occur. TXA is thought to reduce blood loss by preventing blood clot break down. However, results of past clinical studies evaluating whether TXA decreases blood loss and the amount of transfusions are not conclusive. The purpose of this study is to find out whether TXA does in fact reduce the amount of blood loss and the need for blood transfusions or whether it is the same as a placebo.

If we choose to do the study Spencer may receive TXA through his IV once he is asleep. He will randomly be assigned to be in one of the three study groups. Two of the study groups will receive TXA but at different doses. One study group will receive saline as a placebo that has no drug effects. They say that the study will not affect his operation or his care. In total they are looking for 90 patients to enroll in this study.

They say this study will help other children down the road undergoing the same surgery but Spencer will not directly benefit from participating in the study.

This is the chart we received…

Now I pose it to you, would you participate and why or why not? I am leaning towards no even though my pediatrician says he would participate and would let his child participate. My fear is what if Spencer needs the drug and receives the placebo. They say they will not hesitate if they feel he needs the drug but if you were a doctor and you know there is a study wouldn’t you try to honour the study first? I feel those seconds, and that’s all they may be is seconds but they might be valuable to Spencer and his well being. This kind of thing scares me. I would love to say that Spencer was a part of something bigger and have the ability to help others but does it have to be at such a critical time?

The CT Feed and Sleep

2012-06-01T11:48:00.000-04:00

Yesterday morning at 7:00 am I left my house with Spencer awake and happy with high hopes of a successful feed and sleep CT scan. First let me explain what a “feed and sleep is”. In order to do a CT on a baby they need to be asleep so they don’t move. They can achieve this two ways. One is sedating them with a drug that will put him out for about two hours or the mother can nurse the baby and try to put him down naturally and pray that he stays asleep during the scan. We decided after much talking that we wanted to go the “feed and sleep” route as it is a five minute scan. When we got there Spencer was exhausted and hungry so I fed him. I swaddled him as I do regularly for his nap and then I took him into the room with the scanner. You would think it is loud but in fact it is just a quiet hum so I figured we can do this. After all, it is only a five minute scan. Of course, Spency will sleep for five minutes. If it was Eidan (my older one forget it because I couldn’t even really get him down for a nap in his own crib) Spencer is such a good napper I figured we had this in the bag. So, I put Spencer on the table, he stays asleep, phew. They wrap him with a blanket, they put a cover over him so he can’t fall off the table if he does wake up, then they put the lead on him and me. He’s still asleep. I’m so happy! The machine starts, he is still asleep. The machine goes a little louder and faster and starts making cool air. It seemed like it was eternity but oh oh, Spency is stirring. Oh, no, an arm is out! He’s awake and he starts to cry. It seemed like such a long time so I was hoping that he had done it even though he had woken up. The technician came out and said he was 14 seconds away from being finished so unfortunately we will have to try again. I am so discouraged. A nurse came into say not to worry. They have a 99% success rate with the feed and sleep so not to stress. I got Spencer back to sleep very soon after and decided to try again. I put him down, the machine started and boom he was awake right away. A no go! The nurse again comes back told us to go for a walk, feed Spencer his cereal and we’ll try again in a little while. So Steve and I agreed. We took Spencer for a walk, we fed him breakfast. We took him to the Family Centre which is a carpeted library and let him crawl around a bit. He started to rub his eyes and get cranky so back upstairs we went with serious high hopes. It is now 1:30 so it is his usually afternoon nap time. This time the nurses decide that when he is sleeping, they want to take him into the room and try and get him down. They believe that he smells me and that I am his food source therefore maybe being away from me might help. I knew deep down that this was very wrong as I put him down everyday but figured that they were the professionals and they weren’t really giving me a choice. So after me holding him in a good sleep for 15 minutes they take him, and sure enough within a minute I can hear him screaming at the top of his lungs (which he rarely does). I waited a minute and then decided I am not happy with this so I go in and take him back. Again a no go! I was seriously getting discouraged. I called my mother who was watching Eidan and told her what was going on. She was at my sister’s house so that my nephew and son could play together and she was also upset but convinced us that all was fine and that we should persevere! As hard and as frustrating it was we needed to at least give it one more chance. My sister said the same thing so Steve and I talked and agreed that we would try one last time and if it didn’t work this time we would rebook the appointment and have to sedate him. Again, we go downstairs, we eat lunch. I feed Spencer a good lunch of Yogurt and Fruit. He eats well, he poops, we change him and decide to take him to the “playpark”. Inside Sick Kids Hospital is an area where parents can either drop off children or stay with them and play. It is about five little rooms with all kinds of toys, books, instruments, computers, and wonderful volunteers. We decide to go in, Spencer has a ball, he is crawling around, he is playing with all kinds of age appropriate toys, and it is now 2:30. After about 20 minutes he is exhausted. I figure this is it! We go back upstairs to start the whole process one more time. This time he falls asleep so so fast in my arms. I wait about 7 minutes and tell the nurse we are ready to go. This time I am talking to the nurse and Spency is completely out. I bring him in the room and this time they start the machine right away. There was a different technician. She was really sweet but stricter. The man in the morning let Spencer keep the pacifier and this one said we had to take it out. So my heart dropped figuring that once she takes it out we will be finished but….I put him on the table, he’s asleep. They wrap him…he’s still asleep. They put my lead apron on….he is still asleep and snoring away. They adjust the table…he’s still asleep. Lastly, she takes out the pacifier and my heart stops but he stays asleep. All the while I am shaking and shushing him at the same time. The machine starts making that wind again and he’s asleep, no movement at all…..”Oh my g-d” I am thinking. How much time has gone by? I’m trying to look at my watch and figure out how much time has gone past. The machine is moving back and forth but he is still sleeping! Then it stops and I thought “Are you finished….did he do it?” The technician comes out with two humongous thumbs up saying he did it! The table comes out and he is still sleeping. The man undoes the covering with a loud velcro sound and wakes him up! I don’t care! We did it!!!!! What a relief. Spencer did it! I was so happy I could have jumped up and down with him (but of course I didn’t. I felt like a new person and Spencer was looking at me like why are you so happy and loud and why am I awake again? But it was all good. Steve and I gave him a thousand kisses and made our way back home.

This was the last appointment before we have the surgery on June 21^st so now we just wait…

Anesthesia Appointment...

2012-05-23T18:14:00.001-04:00

Spencer at 8 and a half months...

Today Spencer had his anesthesia appointment. It was a quick appointment where they checked Spencer’s base health, meaning his blood pressure, his heart rate, his chest, and his weight. I’m happy to report that they were pleased with all. Spencer is right where he should be and is physically ready for the surgery. The anesthesiologist didn’t really tell me anything I didn’t know before going into this appointment but she did say that they had to inform us of the risks. The risks are small but of course there are risks with any surgery especially one as big as this on such a little baby. There are risks of bleeding which they handle with a transfusion which I already knew and then there was one I did not know about. That is a fatal one called an air embolism where air can get into the blood stream and if not caught quickly can cause death but has not occurred at Sick Kids during this surgery yet and more importantly never with Dr. Philips throughout his entire career as I understand it. So I have to say that Spencer is in good hands and still trust that the outcome will be worth the risk. Even though he is so cute now the condition of Cranio Synostosis is still evident and will probably get worse as he grows. The doctor today was so sweet and told us that they treat every child as if it is their own. They are all so gentle, calm, caring, and more importantly skilled. They make sure he is in no pain and that he doesn’t even have the IV poke until he is under so that gave me some comfort as well. I did learn one thing today that I did not know previously and that is in regards to the blood. The doctor said that they basically treat the blood as if it is a drug; this way they do not give too much or too little and they check and recheck 3 times with 3 different people ensuring that the blood in the OR is the blood intended for Spencer and not another patient.

I can’t wait for this whole thing to be over. Next week we have the CT scan and then that will be it until surgery.

An amazing e-mail...

2012-05-07T22:16:00.000-04:00

Hi Alana,

Don't know if you remember me my name is Cassy we met at Sick Kids in the opthalmology clinic. My son Eli is has Saggital Synostosis. I have been following your blog and noticed that Spencer has a surgery date. Eli has one also, June 7th a few days after his birthday, his birthday is June 2nd so at least he will be able to enjoy it. So glad to hear that both of our boys don't have any pressure and both have healthy optic nerves. YEAH BOYS!!! I just wanted to tell you how much I am enjoying your blog. I know that I only met you for a short period of time but you know whatt they say. "Actions speak louder than words." and your actions through your blog shows a lot about you. And I am accurate in saying that I can tell that you are a very giving person to share you and Spencer's story and journey. I can't even begin to express to you how much you have helped us through this. I just wanted to say thank you for your time and effort with all of your research and most of all your bravery for sharing your and Spencer's story. Please keep posting during Spencer's recovery I would love to continue to see how he is doing. Eli is now crawling and into everything. The good thing is I'm losing weight as I am chasing him all day long. LOL!!! So have fun when Spencer starts.

I'm not very computer savvy but I will figure out how to send you some pictures of Eli's journey. Thanks soooo much for all that you are doing.

Thinking of you and Spencer

Cassy

Dear Cassy,

First of all, of course I remember you. It was a pleasure meeting you and Eli. I'm so glad to hear that your son doesn't have any pressure and has healthy optic nerves as well, what a relief. I'm also glad that I could help you through this most difficult time. Thank you for your kind words. It is not easy to write all the time but knowing that I am in fact helping people makes it a bit easier. Now that we have a surgery date it makes everything all the more real. But I am going to continue this no matter how hard, so that I can help as many people as possible and create awareness about Cranio Synostosis. Spencer will be having two appointments in May, one being his anesthesia appointment and the other being his CT scan. Has Eli had these appointments yet? If so, how did they go? I would love to stay connected with you and be kept up to date with Eli's surgery and recovery as well. On a happier note Spencer is doing the army crawl as well and is probably days away from crawling. I can't wait, he is such a busy little boy already. I have a feeling he is going to be my trouble maker and get into everything...LOL...

Anyway, please do keep in touch and I wish you all the best with everything.

Thinking of you guys as well.

Alana

The Date Has Been Set!

2012-04-25T22:11:00.000-04:00

I received a call from Sick Kids Hospital today. It was Alan George, the coordinator for the Cranio Facial Clinic. He called to tell us that we can have June 21^st as a surgery day if it works for us. He also went on to say that Dr. Dirks, the neurosurgeon we saw was not available and therefore we would need to go ahead with another surgeon. At first I was concerned about this. I was comfortable with Dr. Dirks doing the surgery so I was nervous about what he was going to say next. But then he told me that the new neurosurgeon taking over Spencer’s case would be Dr. James Drake the Chief of Neurosurgery. I was quite pleased. Alan asked me if we wanted to meet with him first before setting the date so I then asked, “Do we have to? If he is the chief, I am more than thrilled that he will be performing the surgery and really do not feel the need to meet with him.” I’m very reassured that Spencer will be in good hands with the Chief of Neurosurgery.

When I looked up Dr. James Drake this is what I found. Dr. Drake was born in London, Ontario, and educated at Princeton University (1969-1974), Royal College of Surgeons in Ireland (1974), University of Toronto (1986-1987), and Royal College of Surgeons of Canada (1987). Training included a research fellowship funded by the Medical Research Council of Canada (1986-1987) in Hydrocephalus. Assumed his appointment in the Department of Surgery, Division of Neurosurgery in 1988, and has been on the surgical staff at The Hospital for Sick Children in the Division of Paediatric Neurosurgery since then.

I think these credentials speak for themselves. So now we know, Dr. Philips will be doing the Plastics part of the surgery and Dr. Drake will be doing the Neurosurgery part of the surgery. Knowing that these doctors are both very capable, educated and skilled doctors eases the mind a little about what our baby is going to be going through.

After this part of the conversation ended Alan George (the coordinator) went on to tell me that he had some other bad news. Spencer’s blood is B +. I am A+ and Steve (my husband) is AB+ which means neither of us is a match for Spencer and he will have to receive blood from the Canadian Blood Service. This upset me a great deal. I know that everyone says that the blood service is safe and reliable however I do have my doubts. Unfortunately now we won’t be able to control what he gets, we won’t be able to build up our iron to help him. We have to put our faith in the “system” and pray that every drop he gets is safe and untainted. Alan explained that if he gets either of our blood the “antibodies we have will cause clumping and will do more harm than good” so Canadian Blood Service it is.

We have two more appointments coming now. One is a CT scan which will be some time in May and an Anesthesiology appointment also to happen in May.

Other than all this Spencer is progressing amazingly well. He is such a happy, outgoing, energetic little boy who is going to be crawling any second! Can’t wait for the fun to begin when he doesn’t sit still for a second!

Spencer at 8 months

Out of the mouth of babes…

2012-04-16T21:27:00.002-04:00

I took my older son skating this week for his final lesson and I had a very interesting and shocking experience that I wanted to share with everyone. Usually my husband Steve comes with me but he had a prior engagement so he couldn’t come this time. This made it harder because that meant I had to put Eidan’s skates on and all the other gear as well as watch Spencer at the same time. Spencer was having a fussy afternoon as he is teething so I had to hold him. I got Eidan ready, took him to the door where he goes on the ice, I put Spencer in a cute snowsuit with a hood and proceeded to watch Eidan’s lesson. A little girl came up behind me, she could not have been more than 4 years old, and asked if she could see the baby. So I of course turned Spencer around and the girl talked to him, made him laugh and was really sweet. But the next thing that came out of her mouth blew me away entirely. She looked up at me and said every so sweetly “why is one of his eyes bigger than the other?” I was dumbfounded. I couldn’t believe that she even noticed. I don’t know if the hood emphasized it or if she was just extremely observant. I did not know how to answer her. All I could think of was that “now the decision is made FOR SURE” surgery is the only option since a four year old picked up on it. Thank goodness he is too young to know or this for sure would have upset him. Luckily I did not have to explain as the little girl’s mother called her as it was time for her skating lesson! I don’t know if I even had an answer to give her. To an adult it’s easy to say he has Cranio Synostosis, explain it, say that it will be fixed and it is cosmetic but what do you say to a 4 year old? All the while I am wondering if my older son Eidan who is also now 4 has ever noticed anything about his brother. He has never said anything so I don’t think he does but you never know what runs through their heads. This also makes me think about how many adults we see and what they must think of Spencer. I find now I am very self conscious for him and I am constantly watching people’s faces as they interact with him. I am also wondering about what people will say or not say when they see the scar that he will have after the surgery.

Eidan and Spencer

Spencer's Opthalmology Appointment

2012-04-04T11:54:00.000-04:00

So Spencer had an ophthalmology appointment this past Friday where we got really good news. Sometimes with Cranio Synostosis there can be pressure on the eyes or brain but in Spencer’s case his eyes and optic nerves are totally healthy. There is no pressure and we should have no concerns about his eyes or eyesight. This makes us all ecstatic.

While I was there I had a really interesting encounter. In the waiting room was a little boy sitting on his grandmother’s lap. I knew instantly that he had Saggital Synostosis even with his hat on. It is amazing that just a few months ago I had no idea that anything like this even existed in this world and now I have become so well educated that I can recognize it just by looking. His mother and I got to talking and I found out that he does in fact have Saggital Synostosis but was only recently diagnosed. This was shocking to me because he looked quite old and to me it was quite obvious. She went on to tell me that she didn’t have a pediatrician only a GP and that doctor just kept saying that it was “molding from birth”. He is almost 12 months and as I understand it they usually do the Saggital surgery around 5 or 6 months old. This made me really think about Spencer’s condition and how we are so very lucky that we had such great doctors looking out for him. He will therefore be right on track for all his appointments and surgery. This mother also made a very interesting comment to me which I took to heart and that was when she got the diagnoses she went online and could find very little about it. I told her that is exactly why I was blogging about it and I gave her the address telling her that I hope it will bring her some comfort and education about this whole ordeal and that she is not alone. She is precisely why I am writing this blog and hoping that it will help bring this condition to the forefront of people’s minds.

Spencer has his next Plastics appointment with Dr. Phillips next Friday. (April 13th) where we will hopefully receive a surgery date.

Spencer at 6 months

Spencer at 7 months