Surgery, Recovery, and Christmas

Hey everyone!! I can't believe it has been so long since I last wrote on here. It makes me realize just how crazy busy we were over the holidays - well, over the entire month of December, really.

We are now into 2016. Can you believe it?! Another year has come and gone, and now we stand in the first days of a new one. What will this next year hold? Your guess is as good as mine. I have grand dreams and goals for myself and my family - so we shall see what 2016 brings to us!

It feels like SO, so long ago already, but Julia had her frontal orbital advancement surgery on November 27th, 2015 just as planned. We had to be at the hospital bright and early like last time - 6:45am, with her last feeding at 2:45am. So once again, I set my alarm for 2:30am and got up to nurse her one last time before she began fasting.

We arrived and went into pre-op. Got her dressed up in her little gown, and waited for the nurse to come take her away. It was both harder and easier this time. We knew the routine and what to expect, but we also knew what would come at the other side of surgery. It was also a lot longer of a wait. Thankfully, Starbucks is in a building close by the day surgery area and the hospital has free wi-fi. Chad and I did some good online Christmas shopping while we waited and I kept myself occupied with some coaching work as well.

The surgery lasted roughly 6.5 hours. We saw the neurosurgeon (Dr. Steinbok) first, and he gave us the run down of how surgery went; meanwhile the plastics team was still closing up her incision. Dr. Steinbok told us that everything had gone exactly as they had wanted. They were able to reshape her skull as they had intended and even had a bit of remaining bone when it was all said and done. The only thing that was a bit off their "plan" was that she had to be given a blood transfusion. We had discussed the possibility of the transfusion beforehand and I had signed the papers giving permission, but was hoping it wouldn't come to that. While she was under the anesthetic there were some issues with her blood pressure and in the end, the anesthesiologist made the call that a transfusion should be done. 

On some levels it's too bad that the transfusion needed to be done, but there was also a positive side to it. Dr. Steinbok said they *might* have been okay to finish without the transfusion but didn't want to take the chance. Since she was given the blood, though, her body didn't have to recovery in quite the same way. Typically, she would have been trying to heal at the surgical site plus make new blood. With the transfusion, her body had better iron levels post op than it did before her operation! Her body's healing efforts were able to be focused solely on her skull and incision - which I believe made a difference in the grand scheme of things.  

Coming out of the anesthetic was a bit more rough than her last surgery. She was sad and miserable (rightfully so!) and refused the sugar water/juice that the nurses were trying to give her. I was so thankful that I am still breastfeeding her, as she happily nursed once we got her in position with all her wires and tubes attached, which greatly calmed her down and gave her some sustenance and peace.

Her initial appearance didn't look too bad, considering what she had endured. I mean, yeah, that is one heck of an incision! But, the swelling was quite minimal to begin with. The surgeons had warned us that the swelling would be the worst in the 24 to 48 hour window after surgery - so we steeled ourselves for that. 

In the recovery room right after surgery

And it was true. The swelling continued to increase and her eyes became smaller and smaller. We were told that her eyes would swell right shut and so I had prepared our hospital bag with all sorts of music and toys that would help her be entertained as much as possible with no vision. But, God kept His healing hand on our little girl and she never fully lost her sight! We had doctors coming in and out just to see her and exclaim how well she was doing. Apparently she was a rare sight, and I know that it's because of the prayer she received from you all!

She continued to surprise us with her good spirits despite what she was going through. She was on the highest possible steady morphine drip that she could have, and the nurses were also administering alternating doses of Advil and Tylenol. She kept vomiting periodically and so she was being given an anti-nausea drug. At first the nausea was blamed on the anesthetic, but eventually everyone decided that it was the morphine that was causing her to feel ill. So, we began lowering her dose and seeing how she tolerated it. 

They started weaning her off the morphine on Sunday morning and by Sunday afternoon she was completely off of it. We stayed overnight on Sunday to see how she did with only the Advil and Tylenol and she was great! She was still sleepy, but had quite long stretches of time where she was sitting up and playing. She also finally had a bit of an appetite and ate some chicken and broccoli for supper. 

Monday morning we were discharged and we happily went home. It's amazing how much being at home in your own bed does wonders for your soul! We kept up the regime of painkillers but she was so much more of her chipper self it was astounding. She happily ate cheerios, jumped around in her exersaucer, and played with her toys on the floor.

As the swelling continued to go down, we could see the new shape of her head. It was hard to get the full idea since her favourite sleeping position left her with quite uneven swelling. I had a towel underneath her crib mattress to give her head a bit more elevation, but it was still pretty lopsided for a while. 

Her incision healed really quickly and has become quite hidden in her hair. It looks more like a headband than a scar, from a distance. 

We had to do daily baths with clean, running water - laying her head in still water was a no-no, so that was a bit of a learning process. Now, it feels odd to do it any other way!

Within the first week of us being home, she was off all her pain medication completely. Like, seriously?! She goes through a major cranial surgery requiring morphine and then is down to no pain management in 10 days....it was mind-boggling. But, I don't know why I'm surprised since this angel of ours seems to be full of surprises all the time!

We did have a bit of a scare two days after getting home from the hospital. I was woken up by Julia screaming, and she had vomited all over her crib. I was terrified that it was a sign of increased pressure on her brain due to her surgery. It was something we had been told to watch for, along with other symptoms, and at 3am it seemed really scary. I was getting ready to take her to the ER when Chad came in with his reasonable thought processes (mine weren't so reasonable!) and said we should call them at the hospital first and see what they thought. So, I pulled out the information pamphlet they had given me at discharge and called the hospital. I spoke with the neurosurgeon on call and she decided it wasn't a major emergency. She suggest that I take her to the pediatrician, but that it didn't seem like we needed to rush to Children's Hospital.

Phew!

So, I called the pediatrician when they opened and headed to their office that afternoon. We didn't see her usual doctor, as he wasn't in the office that day. But, we spoke with one of his colleagues who was very kind and very thorough. He greatly eased my worry and told me that it was just a side effect of all the medication she had been taking. All the medicine was having a slowing effect on her digestive system. Every time that I nursed her, she would vomit because her tummy was filling up too quickly. A little bit of solid food here and there didn't elicit vomiting, but a larger amount of fluid caused her stomach to fill too fast and it's reaction was to push the contents back out. 

Another sigh of relief!

We went home with the instructions of slowing down her nursing. I was to only breastfeed her half as much at one time, but twice as often. I sort of felt like I was nursing a newborn baby again due to the frequency of it all, but she didn't throw up again so it worked like a charm! After a couple days I slowly started to try our usual nursing routine and she tolerated it very well.  

We went for a follow-up appointment with the plastic surgeon two weeks after surgery and he was super happy with how she was healing. He mentioned that because of her uneven swelling she may actually have a bit of an asymmetrical shape to her forehead in the end. He said that any bone dust floating around in there could all settle on the one side....so, we shall see. Personally, I don't see it being very noticeable. But I suppose I don't have the eye of a plastic surgeon!

On December 13th, we celebrated Julia's 1st birthday. How we have arrived at our baby girl being a year old already is beyond me! We have been through SO much with her in the past year, but I still think of her as my baby even though she's becoming a lot more toddler and a lot less baby!

She still isn't walking yet, but she's starting to get pretty mobile. Instead of crawling she's scooting around on her bum. I've heard from other parents that this is a pretty common thing for children with Apert syndrome. She's getting stronger in her upper body and is starting to get into crawling position a bit more, but she'd much rather scoot and I'm okay if she never crawls. She's moving, and that's what matters to me. (Though, my house plants would probably be happier without a child disrupting their dirt and trying to eat their leaves!)

Mmmm, chocolate Shakeology

The night before we travelled to see my parents over Christmas, Julia was up vomiting again. The timing was less than ideal as we were planning on getting an early (4:30am) start to our 11 hour car ride. After a couple hours of intermittent vomiting she fell sleep in my arms. I then crawled into bed for an hour and a half before it was time to get up and go. The car ride was long and tiring, but the girls did wonderfully and we made it safely to my parent's place in time for dinner.

Poor sick munchkin

Bounced right back by the next day

We spent Sunday relaxing and recovering from our lack of sleep and travelling only to be woken up Sunday night/Monday morning to Abby throwing up in bed. I'm not sure why the girls need to get sick in the middle of the night, but that seems to be their chosen time to do so. Thankfully, my parents still live in the house I grew up in so I knew where most things were. So, at 2am I was stripping bed sheets, making a clean bed, and doing a load of laundry. Abby and I then camped out on the bathroom floor watching "Puffin Rock" on Netflix on our laptop. Eventually she was so exhausted that she fell asleep, so we went back to bed. We woke up to Abby and I both feeling ill and we pretty much slept the entire day away. Within 24 hours we were mostly fine and back to normal (thank the Lord!). But, then it was Chad's turn to get sick. He was down and out for 24 hours as well, and logged a lot of sleep/rest. By the end of it all, we were so thankful that it only lasted 24 hours and that Chad and I had staggered times of sickness. That way the girls were taken care of and we were able to take care of ourselves as well.

AND, no one else in the house got it. Hooray! So, we were all healthy and happy with normal appetites in time for Christmas celebrations.

My sister, Melanie, and her husband came for Christmas as well. It was so great to spend time with them and catch up! Plus, the girls loved them both! It helped that there were deer in the back field for Abby to watch - that helped her get over Uncle Justin's scary beard...

Wearing Uncle Justin's hat                       Watching the deer in the field 

On December 22nd we celebrated Abby's 3rd birthday. It's so bizarre that we have a three year old! She is becoming so much more aware of everything, much more independent, and a little sassy. The idea of calling three year olds "threenagers" is quite accurate in my mind. She's constantly testing the boundaries and causing Chad and I to come up with new methods of discipline. But, she's full of spunk and asks some pretty intelligent questions and I'm really proud of the little girl she's becoming!

Christmas was so amazing! We were greatly blessed by our family. The girls were overwhelmed with gifts and poor Julia just couldn't handle the excitement. She was so exhausted that she fell asleep before her head hit the mattress, still in her Christmas dress.

Once we came home, Chad went back to work for a few days before New Years while I got caught up on some laundry, house cleaning, and my Beachbody coaching. We celebrated on New Years Eve with some friends of ours for a while, but were home before midnight to get the girls to bed. So, Chad and I rang in the new year while brushing our teeth (yep, we're pretty darn exciting like that).

On New Years day we helped Chad's parents move out of our place and into their new house. It was a lot of work for everyone, but very exciting! They have a beautiful place not far from us now, and Abby is already asking to go and see Grandma and Grandpa's new house.

Thankfully their new place doesn't have stairs....because this child of ours is going to be climbing everything possible before we know it!!

She had help getting into this position, but it won't 

be long before she's doing it herself!

Happy New Years everyone! I hope and pray that 2016 will be full of joy, love, and happiness for you all.