Celebrating Spencer's First Birthday

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...

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

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!

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...

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

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…

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.