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.

Monday June 25 (Day 5 post surgery)

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)

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)

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)

*** 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)